Recent Episodes and Interviews
Intuitive Coach Tiffany Curran Shares Personal Story of Survival
Tiffany Rose Curran shares her childhood cancer journey with us, of 2-time cancer survivor Keelie Grace Curran, her daughter who was first diagnosed at 3 years old with leukemia. Tiffany is an intuitive life coach with training in several energetic healing modalities, and is a graphic artist and also a singer/songwriter. She shares her personal journey with a rich storytelling gift and greatness of heart and hope that lifts the spirit. You can learn more about Tiffany's work at intuitivetiffanyrose.com.
An Invitation to Write, with Susan Lataille and Wendy Fachon
Both Susan Lataille and Wendy Fachon have each endured the tragic loss of their sons and continue to demonstrate the dignity, love, and healing they have found through the shared process of writing. Both coming to us today from Rhode Island, Susan Lataille is a Certified Master Grief Coach who helps individuals who are grieving the loss of a loved one. It took her years to come to a place of acceptance of her own loss, diving head on into sharing her story and then helping others share theirs in her anthology series called “Shining a Light on Grief.” She has been able to guide others in writing their stories to feel lighter, find a new sense of peace and happiness, opening up to life's new possibilities. Wendy Fachon is the Host of Story Walking Radio Hour; she writes for the Natural Awakenings publication and is an environmental educator for the Empowerment Factory, among other outlets. She as been a participating author in the Shining a Light on Grief series and so brings her unique testimony to the effectiveness and power of that process to our audience.
Marcelo Ortigao: CDMRP IDEA and IMPACT Funding Opportunities for Pediatric Cancer
Before devoting his efforts to advocacy for pediatric cancer research upon the diagnosis and loss of his daughter Juliana to DIPG, Marcelo Ortigao served as an associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), in Bethesda, MD. He is now the Medical and Science Advisor to DIPG Advocacy Group, and also a supporter and advisor to the Marc Jr Foundation in Denver, CO. Dr Ortigao’s work has focused on the epidemiology and immune-biology of vector-borne diseases with specific interests on vector-pathogen-vertebrate host interactions, vector competence and innate immunity, ecology, distribution, and vector control methodologies. Rather than buying into the "rare" excuse for lack of solutions for pediatric diseases, he maintains unequivocally from his experience as a medical researcher that childhood cancers like DIPG (diffuse intrinsic pontine glioma) are neglected diseases, full stop. Today's podcast includes descriptions of certain government funding mechanisms now being more open to pediatric designation. His story has been impactfully presented by the Portrait Project: https://portraitproject.muralhealth.com/stories/marcelo-ortigao-part-ii
The Inaugural Childhood Cancer Prevention Symposium
This historic event, truly a first for a focus on cancer prevention for children, takes place in Washington DC on October 25-26 of 2023. Jonathan Agin, Executive Director of Prep4Gold, Joe McDonough with the Andrew McDonough B+ Foundation and Simon Davies, Executive Director of Teen Cancer America share details of this highly anticipated event, which include a assembly of top experts in oncology and pediatric oncology from around the world, and Keynote Speaker Azra Raza from Columbia University, author of "The First Cell," and the human cost of pursuing cancer to the last. Topics of discussion include environmental exposures and childhood cancer risk, genetics and early detection, defining prevention and parental guilt, and preventing adverse outcomes and late effects. Registration is free for families and advocates.
The People's Voice in Healthcare: Matthew Zachary
Matthew Zachary is an American advocate and one of the health care industry's most respected, influential, and visionary voices with a 25+ year career in entertainment, advertising, marketing, nonprofit, digital health, public policy, life sciences, and broadcast media. Also the founder and CEO of the non-profit, Stupid Cancer, and the young adult cancer movement, Matthew shares with us his personal story of discovering, enduring, and eventually beating cancer, and also his sought-after insight into the norms and conventions of the medical research investment culture, which Matthew helps cancer organizations and patients to navigate. Also co-founder of the documentary podcast studio OffScrip Health, Matthew hosts the popular podcast "Out of Patients, with Matthew Zachary," A Top-10 healthcare podcast.
Live with Paul Miller: Advocacy and Activism Then, and Now
Paul Miller, a dedicated advocate for children with cancer for the past 2 decades, joins us live for an unscripted conversation about childhood cancer advocacy, from the beginnings of his involvement to present day. Notable achievements range from MC-ing events for the Denver Chapter of St. Baldrick's Foundation for several years, to breaking records for blood and platelet donations to Children's Hospital Colorado, to his work with Jack's Angels Foundation towards the success of the National DIPG Awareness Resolution in the House and Senate, including trailblazing 2 Moonshot4Kids Congressional DIPG/Childhood Brain Cancer Briefings and Summits in Washington DC in 2020 and 2022; the impact of his contributions continue.
DIPG Research: From a Researcher on the Front Lines to Trail Blazing Parent, A Pathway to a Cure
Childhood Cancer Talk Radio interviews Noah Berlow PhD, with Children's Cancer Therapy Development Institute from the perspective of dedicated researcher fighting the deadliest childhood cancer on the front lines. The second half features an interview with Gerry Tye, a DIPG Dad who trailblazed the DIPG Research Group on Facebook who shares the reality behind, and motivation for, this crucial research for all of oncology.
XavierStrong: Interview with Scientist Dad, Phil Tan
Phil Tan, pharmaceutical industry scientist from San Diego, shares the story of his son Xavier who was diagnosed with diffuse midline glioma (DMG), and the devastating effects of this diagnosis for the whole family. Brain cancer is the leading cause of cancer-related deaths in children in the United States while cures continue to elude this inadequately funded area of cancer research. Phil, Xavier and the rest of his family sacrificed precious time during their fight to keep him alive to provide a window of insight for the public, as the causes and conditions of childhood brain cancer remain a mystery. The Tan family resorted to alternative, lesser known therapies to create a more effective treatment program for him, while forging new pathways to accessing drugs like ONC201.
An Inside Look (Part II) at DIPG, Childhood Brain Cancer with Wendy Fachon and Janet Demeter
Both advocates and moms share the parallel of their personal experiences with their sons who were both diagnosed with DIPG, with Wendy's son Neil Fachon diagnosed at age 19 in 2016, and Janet's son Jack Demeter diagnosed in 2012. A continuation of a deep conversation from last week, the two share their hope and inspiration for continued advocacy as well as some of their hard-fought successes in the field. Despite the growing attention to the pediatric brain cancer research space, nothing has to date changed for the average family with a child diagnosed with DIPG from the experience 60 years ago. The two friends discuss what they have done to survive and thrive in a relative vacuum and an at-times fractured community, how hope is indispensable when fear runs rampant, and how brilliant scientists like Stalislaw Burzynkski (Houston, TX) and Michelle Monje (Palo Alto, CA) and innovative, collaborative organizations like Children's Brain Tumor Network (CBTN) and the Pacific Pediatric Neuro-Oncology Consortium (PNOC) give thousands an extended license to believe there will be a cure for DIPG.
An Inside Look (Part I) with Wendy Fachon and Janet Demeter
Writer, host of Story Walking Radio Hour, and healthy environment and holistic solutions advocate Wendy Fachon joins host Janet Demeter in a real conversation about the experience of DIPG from the shocking diagnosis/prognosis of each of their sons to their touchstones of hope. For Brain Tumor Awareness Month, we learn about the inspirations for DIPG Awareness Day, and why advocacy is so important make the suffering of these children more visible, and a cure to come more quickly.
A Look Back at Gabriella Miller Kids First, with Ellyn Miller
We were blessed to begin this show 7 years ago when the very first resolution for childhood brain cancer awareness was introduced into US Congress, the DIPG Awareness Resolution. Our second show featured an interview with Ellyn Miller, CEO of Smashing Walnuts Foundation in Leesburg, VA in honor of her daughter Gabriella who fought DIPG and perished in 2013, just 3 years prior at the time of the interview. You will hear how Gabriella's fight, her advocacy for other children, and her confrontational stance with Congress to take more action for our children led to the Gabriella Miller Kids First Research Act. Today, Ellyn continues her work with advocating for the Gabriella Miller Kids First Research Act 2.0, a new funding mechanism for the highly successful Kids First Program at NIH for childhood disease research. You can learn more about this crucial program for pediatric research at NIH.gov.
Saving Sophie with NKORE Biotherapeutics and Tracy Ryan
Today's interview features the amazing Tracy Ryan and the company NKORE Biotherapeutics which she founded with Dr. Anahid Jewett, mastermind of the new NK cell technology and immunotherapy. Tracy shares with us the story of her daughter Sophie who has endured cancer and its treatments since she was not yet a year old, with miraculous results with NKORE's therapies, and also the current challenges to the medical research investment culture for smaller companies, even with great promise like NKORE. Investors on a mission to find the cure for cancer? Look no further!! It's an honor and a pleasure to meet with this literal superwoman who presented her findings at the Moonsho4Kids Reception and Congressional Briefing a year ago in Washington DC on May 17, 2022, to an amazed group of lawmakers and foundation leaders.
Megan Buggs Legacy, with Dr. Kent Bugg and Leanna Headley
We are privileged to give you the opportunity to visit with Dr. Kent Bugg and Leanna Headley to learn more or to reminisce about this extraordinary force in childhood cancer advocacy and dynamic young woman, Megan Bugg. The Megan Bugg Global Rhabdomyosarcoma Laboratory at cc-TDI's new location in Hillsboro OR, opens April 29th 2023, on the eve of the one year anniversary of her death. The event serves as a dedication of the laboratory at this precious moment for the Bugg family.
Revisiting our April 2022 interview with Tracy Ryan, NKORE Biotherapeutics and Founder of Cannakids
When Tracy & Josh Ryan’s daughter Sophie was diagnosed with a low-grade brain tumor at just 8 ½ months old, they knew they had to take action. Their wellness journey began when Tracy’s family was featured in the Ricki Lake produced Netflix documentary, Weed the People. This led the Ryans to become leading trailblazers in the use of cannabis for pediatric disease through their brand CannaKids, and their global advocacy efforts. Through Tracy’s partnership with world-leading cancer research scientist in the field of Natural Killer Cells, Dr. Anahid Jewett, she helped drive groundbreaking research for Sophie, and in the use of cannabis for cancer.
Jack's Heart for Ukraine Supports Kids-of-Ukraine, with US Outreach Coordinator Devan Tatlow
We bring you this interview with Devan Tatlow once more just after the year anniversary of the terrible war waged upon Ukraine by its neighbor Russia, to bring attention to the work of Kids-of-Ukraine and the fundraising efforts to support them at this powerful moment. Through March 24, the event hosted by Jack's Angels and Charity Footprints brings attention to, and supports financially with event proceeds, the critical work of "Kids-of-Ukraine" and their work in rescuing children with cancer and their families in the war-torn country. Devan Tatlow gives us a precious window into the realities faced by children with cancer and their families, caregivers, and the challenges faced in the collaborative international effort to help the people of Ukraine.
Shining A Light on Grief with Susan Lataille, Author
Susan Lataille joins us today live to share her book series with the latest edition, Shining a Light on Grief, real women sharing real stories of love and loss, coming in April 2023. Susan has been producing professional events for the wellness industry in and around her community in Rhode Island for over 12 years. Since the passing of her son Nathan in 2017, she has been guided to help others through the grieving process, and in 2021, she was ready to take the step to become a Certified Master Grief Coach. She now assists others along their own grieving journey by offering love, compassion, and understanding, widening her reach with this book series and the powerful stories shared therein.
Our Nation's Best: A Kid Again, with Kathy Derr
Today's show features an interview with Kathy Derr, Co-Founder and Director of Family Engagement for A Kid Again, a national organization with a mission to foster hope, happiness and healing for children with life-threatening health conditions and their families. The organization provides cost-free, consistent, year-round activities that create meaningful shared experiences and joy-filled memories. A Kid Again serves families in all 50 states, growing and enrolling families, and providing support resources and connections to help families cope with the challenges of raising children with difficult medical journeys. With more than 1.5 million children across the United States suffering from life-threatening conditions, A Kid Again is committed to reaching as many of these impacted families as possible.
Tabletochki and Kids of Ukraine, with Devan Tatlow, US Outreach Coordinator
Replay of the December 15 interview as we prepared the Charity Footprints fundraiser to begin 2/24/2023 to support Kids-of-Ukraine's critical work helping children with cancer and their families in our war-torn sister country. Tabletochki, the Ukrainian charity which helps children with life-threatening diseases in Ukraine and in surrounding countries, had begun building a state of the art children's oncology hospital before the war began, and its work has been put on hold. How much catch up will need to be done with reconstruction, we simply cannot know at this time.
Full Interview, Chief Mission Officer Andy Woods with cc-TDI
From contented stone mason living the dream with his family in beautiful Montana, to scientific investigator at the leading US biotech institute for childhood cancer research, here is an amazing story! Today's show brings to you the complete interview with Andy Woods, Chief Mission Officer with Children's Cancer Therapy Development Institute in the outlying western suburbs of Portland Oregon. Andy gives us generous insight into family life before a life threatening diagnosis for his daughter, and how this event triggered a career transition which was nothing short of divinely guided, as Andy's early contributions to the institute literally enabled the advent of an effective therapy for her disease where there had been none before. The family story portion of this interview was included with the 11-24-2022 Thanksgiving show, along with an interview with Dr. Charles Keller, founder of the Institute.
Kids-of-Ukraine, with Devan Tatlow
Featured today is our host's highly anticipated interview with Devan Tatlow, US Outreach Coordinator for Kids-of-Ukraine, the US Chapter of the Ukrainian charity Tabletochki. As our host was blessed with the opportunity to meet Devan amid the September childhood cancer community festivities in Washington DC, we are pleased to present this interview not only to underline the importance of our mission of greater public childhood cancer awareness, but the added importance of realizing just how much more difficult life is for children diagnosed with cancer and their families in Ukraine, and the importance of supporting the organization that helps them.
CC-TDI MISSION: Make Childhood Cancer Universally Survivable
Scientific Director Dr. Charles Keller, and Andy Woods, Chief Mission Officer of Children's Cancer Therapy Development Institute in Beaverton, OR, discuss in depth their roles with the Institute and the experiences that motivate their commitment to make all childhood cancers survivable. In its first 7 years, cc-TDI has helped move 2 potential therapies into nationwide phase I trials; its works, discoveries and innovations have been published, notably in Nature, Scientific American, NPR, and the Portland Business Journal among others with over 58 scientific publications, and through unique innovation developed a process to expedite 5 drugs to clinical trials annually for children.
The Story Behind HRES404 and Jack's Angels: Sandra Beck Interviews Janet
This episode of Childhood Cancer Talk Radio features the work of master interviewer Sandra Beck turning the tables on Janet Demeter, host of Childhood Cancer Talk Radio. Janet's personal account and story of her son Jack, and story of Jack's Angels Foundation are featured as well as the final push for the DIPG Awareness Resolution, H. RES. 404 in the 117th Congress House of Representatives.
A Moment of Magic Foundation with Kylee McGrane, Founder
Kylee McGrane is the Founder and Executive Director of A Moment of Magic Foundation and is our featured guest of today's episode. She is a President George H.W. Bush Daily Point of Light Honoree, a Sara Blakely and Spanx Red Backpack Fund Recipient, and a New York Yankees HOPE Week Honoree. To date, A Moment of Magic has engaged more than 1,300 college student volunteers from more than 30 colleges and universities to partner with 300+ hospitals and NPO's to provide creative programming to more than 100,000 children.
"A Short Primer on Why Cancer Still Sucks," with Dr. David. J. Stewart
Dr. David J. Stewart's newly published book, "A Short Primer on Why Cancer Still Sucks," is an informative call-to-action for the newly diagnosed and for those who care for them, fortified with decades of experience with both the Canadian and US systems of cancer-care. With host Janet Demeter, Dr. Stewart shares his background of experience and real life anecdotes guiding the framework of this witty and essential resource for cancer patients and caregivers.
PART II: Excerpts from the Moonshot4Kids Congressional Briefing on Childhood Brain Cancer
This episode features excerpts from the Moonshot4Kids Congressional/OSTP Briefing Beginning with an introduction from Congressman Michael McCaul, Founder and Chairman of the Childhood Cancer Caucus, who shares the pioneering spirit of the childhood cancer awareness movement. Keith Desserich, founder of the Cure Starts Now, shares the basic history of this trailblazing organization dedicated to the homerun cure for cancer. The Carson Leslie Foundation is represented by Gerald McDougall Board Chairman, Ripley Martin, Director, and Dr. Michelle LeBeau, CSO of CPRIT; Dr. Brigitte Widemann (NIH/NCI), Dr. Will Parsons, PI/Pediatric MATCH Trial, and Dr. Marcelo Ortigao, scientific researcher and DIPG dad, are among the presenters, brought to you by Bexion Pharmaceuticals.
Moonshot4Kids Hero of the Year: Dr. Charles Keller with CC-TDI
This week's podcast features a recent, pre-recorded interview with the Scientific Director of the Children's Cancer Therapy Development Institute, with its mission to eradicate childhood cancer in all of its forms. Dr. Charles Keller shares with us the beginnings of the Institute, the challenges they have met over the last 7 years, and the influence of the late, great Megan Bugg and her powerful advocacy on the next steps for the Institute. Also included in this podcast is a sneak-peak into the Moonshot4Kids childhood brain cancer briefing that is being shared with the House Health Subcommittee of Energy and Commerce. Dr. Keller submitted, in 2020, a powerful testimony about the unmet medical needs of children with cancer which truly showcases his powerful advocacy for children, which is presented at the end of the podcast as a preview to a public premier on youtube of the briefing material on Saturday, Oct. 8 at 8pm ET.
Team Jack Foundation: On A Mission To Cure Childhood Brain Cancer
The Team Jack Foundation grew out of the dedicated community of Atkinson, Nebraska rallying around Jack Hoffman, childhood brain cancer survivor. Kylie Docter, CEO joins us to tell the story of how, with support from the University of Nebraska, Husker Athletics and people all across the country, the Foundation has expanded its reach and impact to push for a cure for childhood brain cancer, uniting and bringing hope to families everywhere fighting the #1 disease-related killer of American children.
Songs of Love: Inspiration in Service of Children
John Beltzer, CEO and Founder of "Songs of Love" Foundation shares with Childhood Cancer Talk Radio the personal inspiration behind the Songs of Love Foundation, based in New York City. As a way of providing sick children with an ongoing source of comfort and joy, and a therapeutic tool for healing, he set out to create personalized, one-of-a-kind songs for them beginning in 1996. The Songs of Love Foundation is a 501(c)(3) charitable organization which creates personalized songs for children and teens struggling with a life-threatening illness or lifetime disability, free of charge. Each song is professionally produced with lyrics containing the child's name, references to his or her favorite activities, things, people, and pets, and written and performed by a variety of talented professionals in the child's preferred musical style (pop, r&b, rap, rock, alternative, etc). The song is delivered to the child via custom USB drive with an accompanying lyric booklet. Songs of Love is dedicated to the memory of John’s twin brother Julio who wrote and recorded the composition ‘Songs of Love’ just two months before he died on April 12, 1984.
CCTalkRadio Features the 2022 Moonshot4Kids Congressional/OSTP Briefing Part I
To promote the first airing and subsequent youtube feature of DIPG Advocacy Group's Childhood Brain Cancer Briefings, Part I of this Childhood Cancer Talk Radio recap includes expert and patient testimony and the highly acclaimed natural killer cell cancer breakthrough science with NKORE Biotherapeutics Tracy Ryan, CCO and Dr. Anahid Jewett, Chief Science Officer. ADr. Adam Green of Children's Hospital CO, University of CO Denver, and DIPG survivor Nicole Puglisi from Clifton, NJ, are featured.
Texas Leads with the Carson Leslie Foundation, CPRIT, and Congressman McCaul for a Cancer Moonshot for Kids
Featured in this episode which opens Childhood Cancer Awareness Month 2022, is Congressman McCaul's opening remarks to the Moonshot4Kids Childhood Brain Cancer Briefing on May 17, 2022. A unique window into testimony follows his remarks which will be included in a video briefing for Members of the House Health Subcommittee of Energy and Commerce regarding the importance of the DIPG Awareness Resolution as a catalyst for needed systemic change to better accommodate research for the deadliest childhood cancers. Ripley Martin and Gerald McDougall, Board Member and Chairman of the Board for the Carson Leslie Foundation in Dallas, TX, share their unique perspective on what challenges are faced in prioritizing research for childhood brain cancer for industry and pre-clinical research, #1 being that "people just don't know" the struggle in the pediatric cancer research space. Michelle LeBeau, Chief Scientific Officer for the Cancer Prevention and Research Institute of Texas shares with us CPRIT's leadership and innovation in pediatric cancer research, being second only to the NCI in its investment commitments. And Dr. Brigitte Widemann, Special Advisor the the NCI Director on pediatrics, shares with us the latest and most hopeful developments and innovations at NCI and the Cancer Moonshot Initiative. Dr. Will Parsons, Principle Investigator for the Pediatric Match Trial shares the latest developments for pediatrics in precision medicine and the shared challenges in medulloblastoma and DIPG research. This represents a fraction of the briefing material to be submitted to the Health Subcommittee and House Leadership this September in support of a floor vote for H. Res. 404, the DIPG Awareness Resolution.
Megan Bugg's Legacy: The Mission Continues
Today’s show features the story of Megan Bugg, an inspired and determined teenage girl who was a fierce advocate and unstoppable force for childhood cancer awareness and research. Despite the tragic and recent end to her physical life, her spirit lives on in her legacy and loved ones to whom she’s entrusted the continuance of her mission, to end childhood cancer through raising awareness and funding research. In that order, Megan's never "why me" but instead "what I can do" philosophy of life kept her on track and successful in raising well over a million dollars for research and not resting until she was certain that her mission would be continued. Megan's father, Dr. Kent Bugg coming to us from Coal City near Chicago Illinois, and a personal friend of Megan and previous guest of this show, Leanna Headley with Our Amazing Fighters in Richmond Virginia, each give us a personal window into the life of this inspirational and unforgettable young woman.
Your Angels Are Real with Malena Rodriguez, Alex and Ana-Mari Carr
Meet Malena Rodriguez, a therapist transformed to spiritual counselor and intuitive healer, and the amazing Carr family in Miami Florida. Alex and Ana-Mari Carr lead Dean's Dream Foundation, inspired by their 2 year-old son Dean who tragically died of a deadly brain tumor. The Carr's story of loss yet acknowledgement of the greater dimensions of love and life, and Dean's continued existence with them, is truly inspirational. We appreciate their generosity in sharing a window into their experience in a live session with Malena. For more information about Malena's work, visit alignwithmalena.com. And, to donate to important family support and research for pediatric brain tumors, visit deansdream.org.
Lorraine Tallman with Amanda Hope Rainbow Angels
Amanda Hope Rainbow Angels, a finalist for the 2022 Greater Phoenix Chamber’s Impact Awards, is hosting its 10th Annual "Night of Hope" Gala on September 24, 2022. Lorraine Tallman CEO joins us to share the story of her daughter, the inspiration for the foundation. During her three-year fight with leukemia and nine-month battle with a brain tumor, Amanda Hope dreamed that one day she would design a fun clothing line for kids just like her that would provide comfort and dignity during chemo treatments. Her life ended all too soon, but her dream lives on through the foundation's Comfycozy's for Chemo apparel; her legacy continues with the expansion of these programs and services. The Tallman family's unique background and love for travel and other cultures lends insight into the development of this beautiful dream and the charitable work that the clothing itself supports, addressing the challenges and the needs of children and young people worldwide. Visit AmandaHope.org for more information about the upcoming event and/or to be involved with this ongoing philanthropic work with global impact.
More than A Memoir; A Way of Life with Carolyn Breinich
Author and childhood cancer survivor Carolyn Breinich joins us to raise awareness for childhood cancer and share her memoir, Faith, Hope and Cancer: The Journey of a Childhood Cancer Survivor. Carolyn shares from first-hand experience the many untold realities of surviving childhood cancer after having battled ALL, and the importance of faith, hope, and helping others in this success. Armed with faith, hope and advocacy, Carolyn now lives a charmed life on the road, traveling the United States and enjoying its many wonders with her husband Lee and their two dogs.
Your Angels Are Real, with Barbara Anderson and Heather Murison
Lily Larue Anderson was a dynamo of hope, light, and advocacy throughout her fight with childhood brain cancer. Her mother, Barbara Anderson, joins us to share her story and also to meet Heather Murison RN, a gifted intuitive healer and natural medium, where they allow us a window into a real-time transformative healing session. We have created the "Your Angels Are Real" series to provide needed space for a spiritually inclusive platform where we can explore outside the confines of our 3-D world for greater understanding, consciousness, healing, and purpose. In the true spirit of intuitive healing, Heather Murison says it best: "If you feel like this is for you, IT IS for you..."
A Jubilant First: Balloon Wonderland at "Give Kids The World" Village in Orlando FL
Today we get an inside look behind the scenes at the amazing Balloon Wonderland, taking place July 16, 2022 at Give Kids the World Village in Orlando, Florida from an exceptional balloon artist and event decorator Yanira Colon, who was chosen to work with a team of artists on the event. Along with Yanira, owner of "Perfectly Wrapped" in Ellicott MD, we will have the opportunity to hear from Stuart Davies, Big Balloon Build Creator and Producer of Balloon Wonderland, Omar Elkalyoubie, Development Manager for Give Kids the World, and also, Randy Smith, Director of Marketing for Pioneer Balloon Company. Learn why the joy of Balloon Wonderland, a fundraiser for Give Kids the World Village, is so important for the many critically ill children who, with their families, are guests at the park.
It's All In The Numbers, with Marcelo Ortigao and Paul Miller
Approaching a personal record (200) for platelet donation at Children's Hospital Colorado, Paul Miller shares his nearly two decades of experience advocating for kids with cancer and donating his own blood and platelets to the cause, and what he has witnessed in terms of childhood cancer prevalence. In a field where numbers are used to justify almost anything and mobilize needed funds for research, Marcelo Ortigao PhD, an associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), in Bethesda, MD. as well as a Fogarty Fellow at the National Institutes of Allergy and Infectious Diseases/National Institutes of Health (NIH), gives our listeners an eye opening description of what the word rare really means concerning the leading cause of cancer-related deaths in children. Both give, with their experience, needed pieces of the confusing puzzle of how we regard children with cancer according to the world of numbers and statistics.
Part II: Living with DMG, Xavier's Story with Philip Tan
This podcast is a continuation of our March 3 show, "Living with DMG: Scientist Father Philip Tan blazes a Trail for Xavier", where Xavier's father Philip gave us and extensive window into the life of his family and how it had changed since the diagnosis of a deadly brain tumor. In part 2 we address more closely the restrictive nature of clinical trials, and the fact that using drugs off trial allows flexibility to use other drugs, supplements, and other therapies in combination. Also, the family was discouraged from traveling while there were no promising clinical trials being offered at their local children's hospital; Philip thought, "It shouldn't be so hard," as he was seeking ONC201 and found through social media that he could obtain it for Xavier in Germany, of course for an enormous cost. Philip is intent on sharing his information, raising awareness and blazing new trails so that others won't have to go to the lengths--many of which have not been as effective as he had wished--to extend and save the life of his son.
"Your Angels Are Real," First Edition, Hearing From Lucy with Raegen Sieck and Heather Murison
Today’s show marks the beginning of our Spring-Summer 2022 Series, “Your Angels Are Real,” every third Thursday, where I’ll be interviewing a number of gifted intuitive healers of a wide variety of experience and use of different healing modalities. Today’s show features Heather Murison, Registered Nurse and intuitive healer, in a side-by-side interview with Raegen Sieck, looking to hear from her daughter Lucy, and seeking development of her own intuitive gifts for personal healing. Lucy was afflicted with DIPG, a deadly pediatric brain cancer, less than 2 years ago. The knowledge and experience shared here is purely elective with the "Your Angels Are Real" series; practitioners are professionals, or professionals in training. Our aim is to open up the concept of healing and how we find help, and create an allowing space for spiritual experience and learning with an all inclusive ideology which acknowledges the reality of angels, guides, crossed-over loved ones, and an all inclusive concept of God, as a validating influence.
Tracy Ryan: Saving Sophie, Helping Find Real Cures for Kids with NKORE
Tracy Ryan is an innovator, entrepreneur and problem-solver with a special mission, to save her daughter Sophie who was diagnosed with brain cancer before she was a year old. Tracy launched and was CEO of Cannakids, a company which pioneered the development of cannabinoid and terpenoid combinations to treat patient's cancers based on the genetic mutations in their diseases. Tracy witnessed many cases where patients were sent home to die where they have come home to not just survive but thrive because of the use of cannabis oil medicine. Alongside this work her charity "Saving Sophie" works to fund research and crucial investments for pediatric brain tumor research. Today, she leads NKORE, a biotherapeutics company combining proprietary-cellular and protein-based diagnostics, novel AI analytics and a natural, proprietary approach to “Super Charging” Natural Killer Cells to deploy a new era in immuno-therapeutic medicine for the treatment of cancer in patients of all ages. Once again she is at the cutting edge of what we know about immunotherapy and cannabis oil therapy, and her daughter Sophie is doing well today.
Living with DMG: Scientist Father Philip Tan blazes a Trail for Xavier
In our many discussions with parents of children afflicted with brain cancer, perhaps the most telling are those of scientist parents who, like all other parents, are left to their own devices to try to save their children. Philip Tan's son Xavier, who was a in his prime as a college athlete when diagnosed, is limited in his mobility and suffers other mentally debilitating conditions associated with complications from his brain cancer. Phil discusses with us in no uncertain terms: a. the lack of awareness of childhood brain cancer among physicians causing delayed diagnosis and other complications b. what neuro-oncologists offer as treatment options c. the limited number of clinical trials available locally d. how the family found the drug ONC201 off-trial, paying out of pocket, and e, what alternative, complementary modalities they've used which appear to have been helpful to Xavier. Phil shares as optimistically as he can his hopes for Xavier's improvement and comfort, but awareness of the probability of his approaching demise, a tragedy which no family should have to contemplate.
State and National Parent Advocacy for Childhood Brain Cancer
Parent advocacy for childhood brain cancer at the state level in South Carolina with Randy Hinton begins today's show, as he shares his relationship with the South Carolina Department of Environmental and Health Control, and the SC Cancer Registry which operates under that department. Randy's advocacy supported the 2021 South Carolina DIPG Awareness Day Proclamation on May 17th, and helped orchestrate an auspicious event at the state capitol that same day for childhood cancer awareness. After our exclusive reporting on the Cancer Moonshot Announcement on Feb. 2, 2022 at the White House, we hear from DIPG Advocacy Group's leadership Marcelo Ortigao, Medical and Scientific Advisor, Paul Miller, Co-Founder, and Janet Demeter, Founder about the Moonshot4Kids Congressional Briefing planned for May 17, 2022.
Lynette Apodaca and the Marc Jr Foundation, Helping Families for 14 Years
Lynette and Marc Apodaca’s son Marc Jr was diagnosed in 2007 with a diffuse intrinsic pontine glioma (DIPG). The couple quickly realized how little help there was in the form of treatment, information and support for the families facing this deadly brain tumor. They found in their journey that once parents and a community are faced with this cancer, each unknowingly fosters a spirit of compassion and the willingness to work as a team, as, "we are the only hope our children may have." Lynette generously shares with us the story of the support with which Marc Jr Foundation consistently provides families, their partnership with CBTF (Children's Brain Tumor Foundation) in providing a forum of support for bereaved families, and her collaboration with the Jace Ward #Toughtogether group in creating a larger network of support for families, research, and clinical trial access for the childhood brain cancer community.
A Look Inside: Ryan Agnew and the Fight of a Lifetime, for Aspen and for All Children with Moonshot4Kids
Ryan Agnew gives us a remarkable window into his beautiful home life with wife Alison, and two children, Aspen who is turning 6 years old, and her little brother not quite two. Aspen is feeling well despite unfortunate scans of progression from DIPG, and now secondary tumors, and is approaching that point when the family may very well lose their precious daughter. Ryan describes the beauty of his life as well as the torturous mental/emotional reality that comes with a DIPG diagnosis. The family generously shares their experience in support of the national DIPG Awareness Resolution, participating in Congressional Office meetings, and allowing childhood cancer as well as mainstream media to follow their story. Ryan's honesty and generosity of heart paints a picture of hope and love which is stronger than fear, or death. Thank you Ryan. We must do better for our children, and if anyone needed a moonshot, it's our kids with cancer.
Kaylan Strongs Fight Like A Warrior Foundation, with Michela Haywood and Krystle Ilar
From Hawaii, the Island of Oahu, Michela Haywood and Krystle Ilar share their families stories of childhood brain cancer, giving us a window into their world. DIPG--the second most commonly diagnosed brain tumor in children, is an equal opportunity destroyer of hope. In the beautiful state of Hawaii, where family is everything, DIPG lurks to steal the hope of families as it does on the mainland USA. But DIPG's darkness is no match for the strength, faith, and hope that Michela Haywood and her late daughter Kaylan bring to the childhood cancer community. the Kaylan Strong Fight Like A Warrior Foundation helps families, supports research and lends a helping hand where few are able, and hope is scarce. Conversation with Krystle Ilar and Michela Haywood gives revelation on the much neglected topics of early death, Heaven, and the powerful dimension of faith.
From Creating Hope to Kids First, Cancer Moonshot to the Fairness to Kids With Cancer Act; A Look Backward and Forward for Childhood Cancer Advocacy
A look back and forward for the childhood cancer awareness movement, we begin with the Creating Hope Act of 2012, the Alexis Agin Identity Theft Protection Act of 2013, the Gabriella Miller Kids First Research Act of 2014, the DIPG Awareness Resolution, forward to the Give Kids A Chance Act. Mina Carroll gives her famous, drop-mike "Bean's Ball" speech which inspired today's H. R. 2210, the Fairness to Kids With Cancer Act. Featured also is the signing, by President Obama, of the Gabriella Miller Kids First bill, and the urgency powerfully symbolized by H. Res. 404, the DIPG Awareness Resolution, or #Moonshot4Kids. Included is an excerpt from the 2020 Briefing on Capitol Hill, Dr. Adam Resnick (CHOP) speaks to this time factor so powerfully illustrated by DIPG and childhood brain cancer, and finally, Dr. Michelle Monje (Stanford) speaks to the power of collaboration and awareness in accelerating a much needed cure for childhood brain cancer.
A Brave New Year, 2022, with Grace Wethor and Jace Ward
As 2022 begins, we share with our listeners 2 excerpts, a sneak-listen if you will, from "The Hill We Climb," a movie Grace Wethor, DIPG survivor and actress, has produced to promote advocacy for childhood cancer, premiering on January 24. We also share with you a powerful speech by the late Jace Ward, who lost his life to DIPG in July of 2021. The two advocates were friends, and continue to have impact for the childhood cancer community, lending extra star-power to DIPG-the deadliest childhood brain cancer-that it might succeed in letting the world be aware of this voiceless and lost population, and the lack of adequate support for childhood disease research. This episode features in an interview from "The Hill We Climb, with the host of Childhood Cancer Talk Radio, Janet Demeter, followed by a one-time airing of "Jack's Song."
Team Buddy Forever Foundation, with Mom and CEO Jeni Miller
Jeni Miller joins us from her home in New Lothrop Michigan to share the story of Braden “Buddy” Miller and the Foundation that is now his legacy. The Team Buddy Forever Foundation is on mission to fund awareness of pediatric brain cancers while assisting families of children diagnosed with DIPG, giving them the necessary financial support and networking resources for treatment options during this traumatic period. From a brave course of experimental treatments which took the family to Monterrey Mexico, Jeni candidly and generously shares her experience as a mother, and now founder of an organization which proudly helps other families in the spirit of love and joy that Buddy wanted. Always thinking of others, and the well-being of his family, Buddy and generous spirit of their hometown community is making a difference for children with cancer, one family at a time. Visit teambuddyforeverfoundation.org for more information and resources.
Brooke's Blossoming Hope for Childhood Cancer Foundation, aka Brooke's Blossoms
This episode features an interview with Jessica Hester, CEO of Brooke's Blossoming Hope for Childhood Cancer Foundation, a tour-de-force organization inspired by the beautiful life of Brooke Hester. The foundation's two-fold mission first empowers others, especially children, to make a difference for children with cancer by raising awareness through service projects, education and advocacy initiatives, and second, to raise money for research with the goals of early detection and targeted therapies that will be gentler and more tolerable for children. Childhood Cancer Talk Radio has the privilege of hearing Brooke's life story and her cancer story from her beautiful mother, Jessica Hester, and the inspiration of Brooke's Blossoms. The beautiful golden flowers are a constant and loving manifestation and expression of this girls spirit which lives on through the foundation and all of the children it touches, with its programs bringing smiles and hope to children in multiple countries around the world.
Laurel Simer: 20+ Years with DIPG
For this special edition of Childhood Cancer Talk Radio, our guest is a childhood cancer survivor of a diagnosis which, statistically speaking, takes most every life afflicted. Numbers and statistics guide our perspective when we’re in uncertain territory. Those who do survive against unbelievable odds bring us all hope, traversing the gauntlet of doubt, cynicism, and sometimes ostracization. More often than not, they tend to keep a low-profile rather than create controversy, and can be difficult to find--even when they would like to share their story to a larger audience. Laurel Simer, joining us from Utica New York, is originally from Minnesota. Now in her early 30s, she’s been an athlete all of her young life; she played soccer, lacrosse and also hockey, which brought her to Utica originally, to play for Utica College where she now works for the sports division leading the PR department. She's been surviving a deadly childhood brain cancer since she was 10 years old, DIPG, diffuse intrinsic pontine glioma. And for a good amount of that time, she herself had no idea about the true nature of her affliction.
Get Involved, with Paul Miller and Fabiola Flores
This episode features a real-time discussion of what goes into the work of advocating for a childhood cancer license plate. Paul Miller, childhood cancer research advocate from Colorado, has successfully worked at supporting the Colorado plates for childhood cancer. Fabiola Flores, childhood cancer advocate and parent who lost her daughter to DIPG, lives in Los Angeles and is considering initiating this activity in California; we learn of her tragic loss turned to inspiration to help advocate for others. Childhood Cancer Talk Radio's host Janet Demeter, also living in California in the greater Los Angeles metro area, considers teaming up with Fabiola as Paul elaborates on the work ahead-- a considerable project due to the size of the state and the sheer volume of signatures needed for such an enterprise. This ongoing conversation will be revisited in 2022.
2.0: Gabriella Miller Kids First Research Act, with Ellyn Miller
This episode highlights H. R. 623, important funding legislation for a crucial program at NIH for childhood disease research. Ellyn Miller, CEO of Smashing Walnuts Foundation, joins us to share the history of this legislation as well as the work today and forward into this new year supporting this and other activity in the childhood cancer advocacy community. Ellyn's daughter Gabriella passed away in 2013 to DIPG, diffuse intrinsic pontine glioma, but she went out with a huge movement forward for pediatric research. Her enthusiasm and advocacy for other children was caught on tape that went viral and inspired the Gabriella Miller Kids First Research Act signed into law by President Obama in 2014 with her family members, including her little brother Jake, all present. Ellyn's storytelling is captivating, and the magic of Gabriellas legacy is palpable, and powerful in the telling. Visit: childrenscancercause.org advocacy action page to support this crucial legislation today.
Scott Carter Foundation and CureSearch fund Clinical Trial for DIPG
Paula Carter, founder of the Scott Carter Foundation in Tulsa, OK, joins us with Caitlyn Barrett, National Director of Research and Programs for CureSearch, to discuss their collaboration in supporting a new clinical trial for DIPG. The Scott Carter Foundation has been supporting childhood cancer research for three decades in honor of Scott Carter (Paula's son)and his 3 year battle with bone cancer from which he perished in 1996. CureSearch has for its mission the directive to fill in the gaps of the medical research system which have historically failed children with cancer. Working with industry, researchers, and parents, CureSearch identifies and targets crucial areas of research needing support in order to advance research and drug/therapy development for childhood cancers. CureSearch continues to collaborate with many foundations like Scott Carter Foundation across the United States to provide hope and promising therapies for children with cancer.
Shepherd Foundation and the Cancer Patient Equity Act of 2021
Catharine Young, Executive Director of the Shepherd Foundation (Alexandria, VA) visits with us to give history and background to the Cancer Patient Equity Act of 2021, H. R. 5377, newly introduced to the US House of Representatives. With a focus on equity for patients with rare cancers, which comprise a whopping 95% of cancer diagnoses in the United States, the Shepherd Foundation has created a campaign to unite the public and Congress around this idea of equity in diagnostics and access to viable treatments. For too long, the childhood cancer community has suffered under the tyranny of semantics and the use of the word "RARE." All childhood cancers are considered rare diseases and the qualifier rare has been overused to the point of threatening needed consideration for our children with the false idea of irrelevance, a consistent tool of the corporate world to justify the lack of investment into cures for childhood cancers. The Cancer Patient Equity Act has two primary components; 1, to ensure patient access to the latest diagnostic tools--molecular diagnostics, to be provided by Medicare, Medicaid, and CHIP; and 2, an educational program designed and implemented for physicians and the general public on what genomic testing is, how it can be used, and the role of genetic counselors.
Braving the Controversy of Cancer Success: Pioneering Scientist and Physician Dr. Stanislaw Burzynski
Dr. Burzynski’s cancer research and patient care has been inspired by the philosophy of the physician Hippocrates: ‘First, do no harm’. The Burzynski Clinic (Houston, TX) approach to treatment is ‘personalized’ in an attempt to maximize effectiveness and minimize side effects for each cancer patient. However the success of his specialized treatments with many patients has evoked controversy from the conventional treatment world as viable low-toxicity therapies have consistently done over the last century. In this interview we have the opportunity to hear from the doctor himself, to give a down-to earth account of the philosophy behind his treatment practice and the actual circumstances surrounding much of the success controversy. In previous podcasts we interview survivors of a certain deadly brain cancer, DIPG, which continues to baffle scientists where certain individuals do actually survive--and many of these were patients of Dr. Burzynski.
Arms Wide Open Childhood Cancer Foundation with Dena Sherwood, Founder
On July 6, 2008, the lives of Dena and Billy Sherwood changed forever when their then 13-month-old son, Billy Jr., was diagnosed with Neuroblastoma, a very aggressive cancer of the sympathetic nervous system that most commonly occurs in infants and children under the age of five. In August of 2009, in the midst of their son’s aggressive treatment, Dena and Billy founded Arms Wide Open Childhood Cancer Foundation. Through the foundation's Emmy-Award winning documentaries and awareness campaign, The Truth 365, the foundation continues to educate the general public about childhood cancer with a powerful global reach, including the continuing legacy of CUREFEST. In this podcast hour we learn about the personal story and passion of the foundation's leader, Dena Sherwood, who shares with us her experience of the childhood cancer drama as it began to unfold at a time when she herself was working as an oncology social worker with 2 young children.
1Voice Foundation with Mary Ann Massolio
1Voice Foundation, based in Brandon, Florida has been innovating and implementing helpful programs for children with cancer for over 2 decades. We have the unique opportunity to hear from Founder and CEO Mary Ann Massolio, who shares with us her dedication, from her own tragic loss, to serving the childhood cancer community and research community with multiple innovative programs to support the many aspects of the lives of children with cancer and their families. Recent innovations and firsts include the opening of the 1Voice Academy, a school for children with cancer, partnership in the development of a vaccine for leukemia, and a special bereavement group for this year's CureFest celebration, an event for which 1Voice has been a consistent premier sponsor.
BOOK LAUNCH: Candy Cotton Clouds, with Kristena Kitchen
Kristena Kitchen joins us from Maryland and Bryanna's Love Foundation to share her upcoming book launch for "Cotton Candy Clouds" on Thursday, September 9th at 7pm ET Live on Facebook. Kristena's daughter Bryanna tragically lost her life in 2018 to ETP-ALL, a rare type of childhood leukemia for which there are not yet targeted treatments. Bryanna's Love Foundation provides programs to support kids fighting cancer and their siblings, as well as supporting urgently needed ETP-ALL research. The book is an inspired creation to support young children faced with any difficult challenge, and can be found on amazon and in select Barnes and Noble bookstores.
Tori Moreno, DIPG Survivor
Twenty-three year old Tori Moreno is fortunate not to remember too much of her early diagnosis with DIPG, but she remembers enough. Treated at the controversial Burzynski Clinic in Houston, TX, Tori did well on the treatments as an infant, and she is now a long-term survivor of the deadliest pediatric brain cancer. Tori generously discusses with us what survivorship is like today, and what it was like at various other times in her life when she was hopeful for support. Born in Southern California, she now lives in Virginia with her beautiful young son and her partner. She gives a fascinating window into the DIPG world as a young person having survived an infant diagnosis which has so very few survivors.
Taking on The System with Randy Hinton
Without adequate national awareness of the urgent, unmet needs of children with cancer, the failure of the medical research system to adequately address childhood cancer will continue as progress remains a high-grade uphill battle. Randy Hinton is a childhood cancer advocate from South Carolina, and father to Haley who he lost in the 2000s to DIPG, a deadly and prevalent brain tumor in children. Despite advances in advocacy to change and instate policies which help bring needed attention and funding to childhood cancer research and treatment, little has changed for most children with cancer, especially those with brain cancer--the most prevalent and deadly cancer subtype in children.
Jacob's Legacy: National Monument Honoring Children with Cancer
On January 4, 2021, 6 year-old Jacob Senediak of Pittsburgh, PA died due to complications from his fight with DIPG, a deadly childhood brain cancer which spares mercilessly few of its victims. His father, Mark Senediak, joins us on Childhood Cancer Talk Radio to begin a discussion about efforts his family and others connected with "Jacob's Fight," the fledgling foundation developing through this mission, are undertaking to build a one-of-a-kind monument to honor all children present, past, and sadly, future who have fought pediatric cancer and lost their battles. "These brave hero's, like my Jacob, fought bravely and were, are, and will always be the forgers of the roadmap to a cure which will one day exist. While some pediatric cancers have become more treatable through the bravery of those in the past, others like DIPG have not."
A Voice of Hope, Caring, and Leadership, with Jessica Elder and the Children's Brain Tumor Foundation
Jessica Elder, LMSW, LCSW-NY has been the Bereavement Program Manager at Children’s Brain Tumor Foundation for 11 years. Originally from Pittsburgh, PA she acquired a Master of Science degree in social work from Columbia University in 2004, and spent 5 years working as a pediatric oncology social worker in an NYC Hospital. She then earned a post graduate training certificate in child and adolescent psychotherapy from IPTAR in NYC. In 2009 she began her role as Director of Patient and Family Support for CBTF in 2009, focusing on bereavement when she moved to Arizona in 2011. While working in AZ, Jessica also managed a child development program focused on prevention and education for three years. When Jessica had her first child I’m 2014, she continued to work part-time for CBTF. Jessica is also the author of a children’s book which was published in 2020. She currently lives in Scottsdale, AZ with her husband, 4 children and rescue dog while working part-time for CBTF, still running the bereavement chats for the childhood brain cancer community on facebook, and now a group for DIPG parents in conjunction with the Marc Jr. Foundation.
Out of the Box: Looking for Answers with Rick Schiff
Retired SFPD Police Captain Rick Schiff joins us to share his experience in the mid 1990s with his daughter Chrissy who was diagnosed with a rare and deadly form of brain cancer. Since losing her to the effects of her original lethal-dose conventional treatments, he has tirelessly advocated for patients seeking treatment at the Burzynksi clinic in Houston, TX. The fundamental question is, why do the terminally diagnosed not all have access to promising, non-toxic treatments? Why are these therapies cost-prohibitive and only found by personal investigation? These questions are answered, and new ones posed in today's podcast.
The Voices of DIPG Survivors
Today we hear from two strong, resilient, beautiful women who have beat the odds for a childhood brain cancer that normally proves to be inescapable and merciless. Jessica Ressel-Doeden from St. Louis Missouri here in the USA, and Celeste Sabagh in Cordoba Argentina have not only DIPG in common as long-term survivors, but a success with treatment from Dr. Burzynski in Houston, TX. Their paths to healing, wellness, and harmonious community have been extremely challenging. Each explain in their own way the dichotomy of reticence when it comes to sharing their stories and why, and then being overcome by the burning desire to help others. Where conventional medicine falls short, the desperate search "Outside the Box" is the only logical place to look for hope.
Superpowers Unite: The ChadTough Defeat DIPG Foundation
Today's show features interviews with Tammi Carr and Jenny Mosier, leaders of their respective foundations, Chadtough, in Ann Arbor Michigan and Michael Mosier Defeat DIPG Foundation in Bethesda Maryland, recently merged into the ChadTough Defeat DIPG Foundation. Each foundation leader has trailblazed on her own, and in collaboration with others, research in pediatric neuro-oncology and in raising needed awareness for the urgent, unmet needs of children with brain cancer. Both leaders have lost their precious son's to DIPG, diffuse intrinsic pontine glioma, the deadliest childhood cancer, and were left by the experience determined to change the status quo and pave the way to a cure. Stronger together, they are a force for hope for thousands of children and families across the USA and around the world.
From Tragedy to Leadership, Information, and Hope: Gerry Tye, DIPG Dad
After losing his precious son Talin to brain cancer, Gerry Tye of Sydney, Australia took a leadership role in creating support and networking for the childhood cancer community, specifically for DIPG and childhood brain cancer during a critical period of growth between 2012 and present. Founder of the DIPG Research Group and administrator for DIPG Awareness for Family and Friends groups on Facebook, Gerry has helped provide a platform and networks for parents find help for their newly diagnosed children by tirelessly providing the latest information in research and clinical trials available around the world.
Hope Over Depair: Mariah Olson, Neuroblastoma Survivor
Mariah Olson was diagnosed in 1980 with neuroblastoma at the age of one year, and is a living testament as a survivor to the difficulties that so many children with cancer endure as a result of toxic, out-dated treatments they receive. She also attests to the pycho-social challenges of growing up with severe medical issues which affect children with cancer. Most importantly, she is a testament to the power of hope and positivity amid these challenges which are generally the source of despair and great suffering. Mariah is a champion for other young people afflicted with cancer; she works for nine non-profit childhood cancer organizations and advocates for others at both the state and national level. Withstanding all that she has been through, she triumphs as an oboist with several musical ensembles and is happily married. We are blessed to share conversation with this outstanding advocate with such generosity of heart, and look forward to the publishing of her autobiography, "Hope Over Despair."
The Fairness to Kids with Cancer Act with Inspiration Mina Carroll
Mina Carroll with the Storm the Heavens Fund literally coined the “We Must Do Better” phrase, for children with cancer, in confronting the terrible reality in our society today that children are for all practical purposes neglected for research funding by the system in place. Mina's beautiful daughter Philomena was afflicted with DIPG, the killer childhood brain cancer with a less than 1% long-term survival rate. Mina shares with us her experience in growing a foundation, raising funds for research, but most importantly--lifting her voice on behalf of children with cancer who are underserved by the medical research investment culture today. Mina Carroll worked with Congressman Brian Fitzpatrick to introduce the 2021 Fairness to Kids with Cancer Act, a precedent setting bill for children calling for greater research funding for this vulnerable and precious population, H. R. 2210.
Childhood Brain Cancer: PNOC Foundation Informational Webinars
PNOC Foundation Administrators Allyn Campbell and Rachael Cassells join us to discuss the May 1 DIPG/DMG webinar and how people can register at www.PNOCF.events, and other upcoming webinars for the special month of May. For Brain Tumor Awareness Month, we share childhood brain cancer statistics and facts, and why awareness for childhood brain cancer is so important for research, and outcomes. AND! The May 1 webinar on DIPG/DMG will repeat, so be sure to visit pnocf.events for more information. The Pacific Pediatric Neuro-Oncology Consortium (PNOC) is an international consortium with centers within the United States, Europe, Asia and Australia, dedicated to bringing new therapies to children and young adults with brain tumors with the goal to improve outcomes by translating the latest findings in brain tumor biology into better treatments for these children.
All In To Win with Christina Wascher
Christina Wascher, a long-time childhood cancer advocate, is the President and founder of the All-In-to-Win Foundation based in Miami Florida since 2013. Christina has been a philanthropist and an entrepreneur in US and European project developments for Claridon International since 1982, specializing in start-up projects and bringing them to completion. She brings her expertise to the field of pediatric neuro-oncology in support of pharmaceutical interests needing greater support to meet the clinical needs of children, and facilitates the work of researchers and doctors in neuro-oncology by effective networking and communication skills. An active and passionate advocate for children with cancer, she helps push pediatric treatments forward and helps families with support through financial aid. Perhaps All In To Win's most treasured role is in bringing smiles to so many faces of these courageous children. The foundation is a lifeline for many families who do not have a local organization for childhood cancer, or near to the treatments they need.
"Help and Hope Happen Here," a New Podcast with Mark Levine
Mark Levine is one of those special people who are moved from an inner conscience and love for all children. Mark and his wife Debbie live in Stoughton, MA and have two children and two grandchildren. Retired from managing a small business for many years, Mark now devotes his life’s work to advocacy and activism for children afflicted with cancer. He began volunteering for the Jimmy Fund in 2007, working events in area high schools to help this fundraising arm of Dana Farber. In 2013 he began his own brand of fundraising event the Jimmy Fund called, “Putting for Patients”, and he also visits once or twice a month, the oncology ward at Boston Children’s Hospital. From these experiences he has become passionate about the important aspects of pediatric cancer such as psychosocial issues for these children, and the long term side effects of toxic treatments. After the 2020 pandemic shut down all of his events, he decided to start a pediatric cancer podcast to keep awareness of childhood cancer in the Public eye and also to continue supporting the Jimmy Fund. It’s called, “Help and Hope Happen Here”, and began in August of 2020. It can be found on Apple, Google, Spotify and other podcast directories.
American Sustainable Business Council and the Childhood Cancer Prevention Initiative
Three experts and current leaders in their respective fields join us today to discuss their involvement with the Childhood Cancer Prevention Initiative, beginning with David Levine, CEO of the American Sustainable Business Council, an organization which recognizes that our current system of capitalism does not work for most Americans, and strives to facilitate communication, conversation, and innovation to create an economic system that works for all. The (ASBC) is the leading business organization serving the public policy interests of responsible companies, their customers and other stakeholders. ASBC advocates for policy change and informs business owners, policymakers and the public about the need and opportunities for building a vibrant, broadly prosperous and sustainable economy. Mr. Levine is joined by Jonathan Agin, CEO of the PREP4Gold childhood cancer foundation, and Nsedu Obot Witherspoon (MPH) who serves at the Executive Director for the Children’s Environmental Health Network (CEHN).
Bexion Pharmaceuticals: Leveraging the Lysosome
Dr. Ray Takigiku (founder and CEO) and Dr. Richard Curry, Medical Affairs Consultant at Bexion Pharmaceuticals discuss BXQ-350 and the 2 phase II adult clinical trials coming up as well as a phase II for a pediatric brain tumor, a potential breakthrough treatment. Additionally, other clinical and non-clinical data suggest BXQ-350 has activity in CNS diseases, including peripheral neuropathy. Learn about the cutting edge biological paradigm of leveraging the lysosome, as Bexion believes the lysosome is an underexploited cellular orchestrator involved in multiple diseases. BXQ-350 is a first-in-class biologic containing the multifunctional, lysosomal activator protein, Saposin C and a phosphatidylserine.
The Difference of a Decade: A Conversation with Childhood Cancer Advocate Jonathan Agin
This edition of Childhood Cancer Talk Radio gives a personal look at the landscape of childhood cancer advocacy over recent years, between parents of children afflicted with brain cancer. For this, I have the honor of sharing conversation and perspective with fellow advocate Jonathan Agin, whose participation in the childhood cancer community spans this past decade and beyond; he brings significant legal, biotech, corporate management and parental experience to the field, which has seen advances in legislation, the formation of new networks benefiting patients and families, and greater participation of parent advocates at the federal level. From this perspective, we take a look at the actual progress made for our children who become diagnosed with various cancers, the still deadly and lesser-known yet largely prevalent subtype of childhood brain cancer, with a hopeful look toward the near future as the need for greater research into causes and conditions begins to get more attention with the Childhood Cancer Prevention Initiative. Most recently, In January 2021 Jonathan formed PREP4Gold (Preparation, Research, Education and Programs for Childhood Cancer--formerly "Connor Cures") and serves as Executive Director.
A Look Back, and Forward for Advocacy: Children's Cancer Cause 2021
Today's show is a recap of recent advances in childhood cancer advocacy and reiterates the basic facts about childhood cancer for which we strive to provide a worldwide platform for awareness at Childhood Cancer Talk Radio. As co-founder of DIPG Advocacy Group, host Janet Demeter is in a unique position to share the latests developments for childhood brain cancer advocacy and a new introduction of the National DIPG Awareness Resolution. At half-time we are privileged to bring you some excerpts from a recent webinar with the Children's Cancer Cause with Sue Emmer, Policy Counsel, detailing the three most important points of focus for advocacy for children with cancer as we move forward into 2021: community collaboration, pediatric drug discovery and development, and support for childhood cancer survivors. Children's Cancer Cause is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families.
Life Beyond DIPG: Inspiration and Avocation
In this edition of Childhood Cancer Talk Radio, members of the DIPG Advocacy Group Gerry Tye (Syndey, AUS), Katherine Bader (Rhineland, Missouri) and Marcelo Ortigao (Fort Collins, CO) share their personal experiences with DIPG, one of the more common types of childhood brain cancer, and the deadliest with very few survivors. DIPG Advocacy Group is a coalition of childhood brain cancer organizations and individual childhood cancer advocates which initially formed to support the DIPG Awareness Resolution in US Congress, and continues as an international group as the impact of awareness affects research, education, and accessibility to clinical trials.
Keith Desserich and The Cure Starts Now
Keith Desserich, co-founder of The Cure Starts Now worldwide charity for pediatric brain tumor research, joins us today at this hopeful new year's beginning. When Keith and his wife Brooke found out that their beautiful daughter Elena had DIPG, a devastating pediatric brain tumor in 2006, there were no dedicated clinical trials, no networks, no information and no parent groups. Elena’s story was the first public case of DIPG, ultimately becoming the subject of a bestselling book titled “Notes Left Behind” that was published in 22 languages and forming the basis for what is now around $16 million in funded DIPG research with millions more now spent annually. After Elena’s death in 2007, they created The Cure Starts Now Foundation, the largest DIPG/DMG research charity with 40 locations in the US, Australia and Canada. They also founded the DIPG/DMG Collaborative coordinating the efforts of another 25 independent DIPG centric charities, and so many more developments approaching the threshold of a cure. We learn about new innovations in research and networks for family support, including the new DIPG Warriors Facebook group, all of which can be found at www.thecurestartsnow.org.
For the Love of Aspen: The Agnew Family
For the love of Aspen, diagnosed 6/20/2020 at the age of 4 with DIPG, a terrifying childhood brain cancer, father Ryan, mother Allison, and Aunt Tristin join us to share what this journey has been like as we are precariously close to the discovery of a cure. Along with grandfather William Agnew, this family is dedicated to raising greater public awareness for DIPG to attract a cure more quickly for all. The Agnew family is exceptional in their immediate action and involvement with the DIPG Advocacy Group, a coalition of childhood cancer advocates and pediatric brain tumor foundations founded for the purpose of supporting the DIPG Awareness Resolution in US Congress. As the experience of DIPG does not lend itself to hopeful advocacy, generally speaking, this family's bold stance of publicly sharing their experience with Aspen as their story unfolds has helped raise awareness for DIPG and also sped access to the latest hopeful treatments. Aspen's father Ryan began the 9:12 DIPG Challenge group on Facebook which currently has almost 1000 followers and supporters after a very short period of time.
Arms Wide Open Childhood Cancer Foundation, with Mike Gillette!
Childhood Cancer Talk Radio was fortunate to interview the man behind the camera of The Truth 365 for our show Thursday, Jan. 7 2021. A childhood cancer advocate since 2007, Mike Gillette is an Emmy Award-winning filmmaker and photographer who also serves as Public Relations Director for the Arms Wide Open Childhood Cancer Foundation. He lives in northern Virginia with his family, and uses his talents to help give a voice to children with cancer. We get a privileged glimpse into the background of the caring person who co-founded, along with AWOCCF founder Dena Sherwood, The Truth 365 campaign. Mike is one of those rare and beloved individuals who have not themselves had a child afflicted with cancer in his own family, but was touched by the experience of witnessing a child's fight with cancer and realized, "this could be my child," that these are all of our children. He became an influential and effective childhood cancer advocate and was integral to the creation of CureFest, an annual event for the childhood cancer community on the National Mall in Washington, DC. In our conversation we discuss advocating for children during the pandemic and how the pandemic has adversely affected non-profits in their outreach, the lesser-known realities of childhood cancer, advocacy, and a little history of CureFest and tentative plans for CureFest '21 and most definitely CureFest 2022.
Hope and Help on Christmas Eve with Bryanna's Love
"Filling the gaps" is the mandate in the childhood cancer world rather than a nice idea. Kristena Kitchen with Bryanna's Love Foundation in Burlington, MD, works tirelessly with a small army of volunteers to make her programs work, inspired by her daughter Bryanna who lost her life to the deadly "ETP-ALL", or Early T-Cell Precursor ALL. "Give Kids a Snuggle" continues giving stuffed animals to children at Children's National Hospital. "Sibling Love" serves the most overlooked members of the childhood cancer community, siblings of the affected. Now, Kristena shares with us the challenges and triumphs in beginning her new program "Home-to-Care", in the attempt to solve logistical problems which families invariably face: living without income or savings; travel issues, childcare during treatments and a host of other unforeseen difficulties. Working locally, Kristena's vision for the project is national. Visit www.bryannaslove.com to donate and learn more about how you can help.
"Against the Odds," with Howard Salmon
Howard Salmon comes to us from the Ronald McDonald House near the UC Davis Children's Hospital in Sacramento, CA, where his son Liam is receiving some emergency care after having had some difficulty breathing. Liam was diagnosed in January 2020 with DIPG, diffuse intrinsic pontine glioma, a deadly and prevalent form of childhood brain cancer. Howard generously shares precious time with us, as Liam may not have much longer to live. He describes the reality he faces, and discusses in detail the importance of greater awareness for DIPG, pediatric brain cancer, and the general lack of funding for childhood cancer research. He is a proponent of the National DIPG Awareness Resolution, urging Congress to pass it before the end of 2020. "We can't get help fast enough to save our kids."
"Find the Good!" with Katie Gaskin and Anthony's Avengers
Anthony’s Avengers Defeat DIPG Foundation is a chapter of Michael Mosier Defeat DIPG Foundation, the parent foundation based in Maryland that honors the legacy of 6-year old Michael Mosier, who also courageously fought DIPG, succumbing in 2015. Katie Gaskin established Anthony’s Avengers Defeat DIPG Foundation in honor of her 7-year-old son, Anthony Pappalas, who bravely battled against DIPG for 19 months before passing away on March 9, 2017. Like many families who learn of their child’s diagnosis, it was the first time the Gaskin family had heard of DIPG. We discuss in depth the leadership that the Defeat DIPG network has lent to the national movement for DIPG Awareness Day, and then the precious, heart-wringing tragedy that nearly all DIPG parents experience as they witness their children struggle to the end, the motivation for this awareness movement.
LIVING RESEARCH with Rachna Prasad and Jace Ward
A Class of 2020 graduate from UCLA in anthropology, Rachna Prasad is working on a Masters program in clinical research at the University of Zurich, living her dream and honoring the legacy of her brother Mithil, who lost his life to brain cancer. She also manages the Mithil Prasad Foundation based in San Jose where she is from, and is developing a podcast called "Hear The Rare", devoted to exploring the science and treatment of childhood brain tumors. Present and partner to the beginning of this podcast production was Jace Ward who joins us for the second half of the show; Jace is involved in an experimental protocol for DIPG that is projected to accept only 6 patients in its first year of operation. On this day, Oncoceutics Inc. released an official statement regarding an exciting new trial for ONC201, a drug which helped Jace live with DIPG long enough to get on the experimental Carr T-Cell treatment he has just received, with which he is faring well. Jace and his family, notably his mother Lisa Ward, have accelerated the actions of advocacy in the space of pediatric neuro-oncology with their commitment to bring people and resources together to find a cure.
Josephine and Dana
Two special moms, Patricia Palman and Lenore Scatton, share about their amazing daughters who left a legacy of inspiration from their fateful battles with DIPG. Josephine Palman and Dana Scatton each had huge community followings and an outpouring of love and grief with their passing. They both coincidentally enjoyed the same beloved place in nature at Jim Thorpe, PA. The two moms first crossed paths in Monterrey, MX for an experimental treatment from which they, like many others, found an extension of their life for their daughters. Dana leaves behind the beautiful baby Aries, as she was diagnosed while pregnant; tragically, her sister Lydia followed her to the beyond shortly after Dana's death. Today, the two mothers share a unique and precious friendship with their angels close by.
Fight for Owen - Find A Cure, from South Africa
Candice Hamman and Carl Jansen VanVuuren tell the story of their son Owen who was diagnosed in June 2020 with DIPG, diffuse intrinsic pontine glioma. There are no treatment options besides the standard radiation and palliative care, and purchase of the experimental ONC201 from Germany. Candice and Carl share from the heart what it's like to feel helpless to save their son, yet determined to have faith that they'll get that needed break, somehow. Childhood Cancer Talk Radio is committed to helping connect this family with needed resources and information. Sadly, promising clinical trials are difficult to qualify for and not available in South Africa. For more information about Owen and his family, visit www.facebook.com/fightforowendipg
The Rare Cancer Awareness, Research, and Treatment Act of 2020
The Shepherd Foundation is working with Congress to introduce a bill to position the rare cancer community for better outcomes. Founder and rare cancer patient David Hysong and CEO Catharine Young join us to discuss the recent virtual briefing with Congressman G.K.Butterfield (NC-1) and Gus Bilirakis (FL-12), Greg Simon, former Director of the Cancer Moonshot and President of the Biden Cancer Initiative and others regarding a pivotal legislative measure to be introduced before the end of 2020. The Rare Cancer Awareness, Research and Treatment Act of 2020 1, sets the federal incidence definition of rare cancer as there is no current global standard as such, 2, increases research and development funding, and 3, mandates coverage for molecular diagnostics and genetic counseling at diagnosis for Medicare patients.
Juliette's Journey of Healing and Hope
Marti Jaenke Dexter tells the story of her youngest daughter of four children, Juliette, described sweetly as her "gift from God." She was born on July 9, 2003 with two rare genetic conditions, Pierre Robin Syndrome and Moebius Syndrome. Though one required surgery as an infant, Juliette had a happy, healthy childhood and social life. She was diagnosed in 2014 with Myelodysplastic Syndrome (MDS)with a very high probability of developing leukemia; the discovery of bone marrow fibrosis was tragically not in her favor for treatment. The family did not give up hope and went through a Cord Blood Transplant which unfortunately failed. Her second transplant that December resulted in GVHD to which she ultimately succumbed. Juliette left a legacy of healing and hope with her family which you may follow at "Juliette's Journey of Healing and Hope," on Facebook. Marti plans to publish a journal book for children inspired by this journey, a tangible gift of their forever bond. Our advocacy segment focuses on H.R.6556, legislation that supports the NIH Kids First Research Database, a crucial source of information and clues for the medical community of rare genetic pediatric disease and pediatric cancer.
What's In A Day
Childhood Cancer Talk Radio has the privilege of sharing with our listeners a window into the lives of three families facing a similar challenge: a child diagnosed with DIPG. At varying places in the journey, David Turner Jr., and Jayce Diaz, and Ryan Agnew, father to Aspen (4) share the realities of their lives. David Jr. has become an advocate for protecting on another in the pandemic, and speaks out for the use of masks. He shares with us his determination to make each day the very best day ever. Cassie Diaz relays messages from her son Jayce, as we witness the heartbreaking cruelty of the disease afflicting this bright, sweet young boy. And finally Ryan Agnew shares the angst of a new diagnosis amid the period of respite from DIPG due to radiation treatment and all the conflicting thoughts and feelings it brings. Ryan is focused 100% on sharing his experience, that others might benefit from increased awareness and attention today to bring a cure more swiftly.
Why We Advocate, September 2020
It's Childhood Cancer Awareness Month for all of our guests every day of the year...so it's important to us to share with the world our stories and the truth about childhood cancer. Today we see commercials asserting that 80% of children survive cancer, touting the work of this or that institution; many might thereby deduce that we're doing great with childhood cancer, and in supporting childhood cancer research...that most kids survive, and, we got this. But from the perspectives of our guests today, nothing could be further from the truth. Co-founders of DIPG Advocacy Group Elizabeth Psar from Knoxville, TN, Paul Miller from Littleton, CO and host Janet Demeter from Agua Dulce, CA discuss the reality of advocating for "The Little Bill That Could" aka #Moonshot4Kids for the last 4 1/2 years, bringing stories from around the country to lawmakers offices in Washington, DC, discussing the urgent need for solutions for children with brain cancer. Childhood Brain Cancer is the leading cause of childhood cancer deaths. It is also the most prevalent subtype of cancer in children. Discover the fact that our research investment culture does not prioritize children, or those facing certain death, that we must fight to have this fact recognized. Finally, Dafina Basha joins us from Yonkers, NY. She tragically lost her only child, her beautiful daughter Elita to DIPG, diffuse intrinsic pontine glioma, and tells us how she is turning a death-bed promise that she would fight for other children with DIPG to one day have viable treatments, into meaningful advocacy with impact, today. She and Elita are Childhood Cancer Talk Radio's Heroes of the Week.
The Fight Like Emilie Foundation, with Trey Gibson
The Fight Like Emilie Foundation is dedicated to supporting research, families, and initiatives and policy for childhood cancer awareness and research through advocacy. Trey Gibson joins us from Bossier City, Louisiana, to share the story of his daughter Emilie who was diagnosed with DIPG, a pediatric brain cancer in September of 2016 at the age of 9. Over the course of her 14-month fight, she received treatment in Shreveport, Memphis, San Francisco, and Houston all while trying to be a normal little girl. Since her passing on Halloween night, 2017, along with Emilie's mom Candi, brother Alex, and several great friends, Trey Gibson founded the Fight Like Emilie Foundation.
Jonathan Daniels, Cystic Fibrosis Foundation and Paid Leave for COVID-19
Jonathan Daniels, Senior Manager for Policy & Advocacy at the Cystic Fibrosis Foundation, lobbies Congress on behalf of the more than 30,000 people with Cystic Fibrosis in the United States on issues ranging from access to adequate, affordable health insurance to research and development policy. The Cystic Fibrosis Foundation (CFF) is the world's leader in the search for a cure for cystic fibrosis, advocating for programs, agencies and policies that help advance research and drug development, improve access to specialized, quality cystic fibrosis care and raise awareness about the disease. CFF strongly supports paid leave in the next COVID package, as well as increasing the federal match for Medicaid, COBRA premium assistance, creating a Special Enrollment Period for people to signup for insurance on the individual marketplace (Obamacare), and supporting R&D investment in new antibiotics and a more stable antibiotics market.
St. Baldrick's Foundation, Childhood Cancer Research and Advocacy Giant--with Sarah Milberg
In the year 2000, the annual reinsurance industry’s St. Patrick’s Day party, held at Jim Brady’s pub in Manhattan, becomes the first St. Baldrick’s event. The goal of shaving 17 heads and raising $17,000 turns into 19 bald heads and $104,000 donated to fund the research of the Children’s Oncology Group. By 2019, they had broken all fundraising records for childhood cancer research, helped support research into the new childhood cancer drug for neuroblastoma, and reached $300 million in research since 2005. Our show's special guest, Sarah Milberg, became the new Director of Government Relations and Advocacy for St. Baldrick's in January 2020 with over 10 years of experience of government relations and politics, and leading the Leukemia and Lymphoma Society's federal policy work on childhood cancer and research funding. She also serves, currently, co-chairman of the Alliance for Childhood Cancer, a coalition comprised of more than 20 national patient advocacy groups and professional medical and scientific organizations.
Superhero Advocates
Today’s show is a special tribute to the superhero advocates in the childhood cancer community, those concerned citizens among us who never draw attention to themselves but serve to help children with cancer in a variety of capacities, but one aspect of their lives which we are recognizing today is that each is acting out of empathy and compassion without having had one of their own children affected by cancer. We have today the opportunity to meet the mild-mannered alter-egos behind this super-power of three concerned-citizen advocates for children with cancer: Ginger Diamond, a retired nurse from Douglas, GA; Paul Miller joins us from Littleton, CO, who has been in corporate America for many years, and Kristopher Murdock, a music teacher and substitute elementary school teacher, also with a ministry of drama and music, from Frederickstown, Missouri.
"Our Amazing Fighters" with LeAnna Headley
Our Amazing Fighters started as a simple instagram page in August of 2014 by now 19-year-old LeAnna Headley from Richmond, VA to raise awareness for childhood cancer. Since then it has evolved into so much more than a social media page; Our Amazing Fighters is devoted to raising awareness, sharing stories, advocating for kids on Capitol Hill, and bringing joy to kids and their families as they fight pediatric cancer.
Tribute to DIPG Children Part III
Because most all of our children die from DIPG,the intense suffering and grief has remained out of sight and out of mind of mainstream consciousness for decades. There is still insufficient awareness in Congress and in our society to the urgent, unmet needs of most children with cancer, and certainly brain cancer, a prevalent form of pediatric cancer, and the deadliest. Today's show features 3 children and their families who in their own unique way helped inspire the DIPG Awareness Resolution in US Congress today. Today's show features 3 children and their families who in their own unique way helped inspire the DIPG Awareness Resolution in US Congress today. We begin with Wendy Fachon of East Greenwich Rhode Island, and her son Neil; Wendy is an environmental science educator and advocate for children on many fronts. Next, Elizabeth Psar, an attorney ad Litem for children in Knoxville TN with the Julia Barbara Foundation and cofounder of DIPG Advocacy Group, shares about her daughter Julia and the pathway she has helped forge to raise national awareness for DIPG. Finally, Brian and Tamara Ekis from the Pittsburgh area in North Huntingdon PA share about their daughter Grace and Reflections of Grace Foundation, an organization which has been helping children with DIPG and their families, and raising funds for research, since 2009.
Meet Anne Beatty: Survivor, Advocate, Teacher.
Meet Anne Beatty from Prattville, Alabama. She retired in December 2019 after teaching for almost 24 years. Sadly, complications from a brain tumor--physical, and social--made retirement unavoidable. Her brain tumor journey began July 4, 2018; she had open heart surgery in February 2018 for a previously undetected congenital heart condition. On July 4th, she had a stroke due to a second undiagnosed heart condition; her brain tumor was discovered at that time. Anne has teamed up with DIPG Advocacy Group to raise awareness for this deadly pediatric disease. As a concerned citizen and brain tumor survivor she shares with others about brain cancer to help save lives and bring a cure faster to children afflicted with this deadly disease, as brain tumors are the leading cause of cancer-related death in children in the United States.
About Juliana, with Tanja and Marcelo Ortigao
Marcelo Ortigao, associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), and his wife Tanja Hess, large animal veterinarian and associate professor of equine sciences at Colorado State University Fort Collins, join us to share their family's recent and tragic loss, and resultant advocacy for pediatric brain cancer. Juliana passed away on March 3, 2019, as a result of DIPG, diffuse intrinsic pontine glioma. Marcelo and Tanja, and their surviving son Felipe, continue to contribute to the DIPG cause. Marcelo is the leading author of a white paper currently in the works and focused on the modernization of pediatric DIPG clinical trials.
Tribute to DIPG Children, Part II
This is Part II of a special audio presentation of the DIPG Awareness Resolution Celebration and Tribute to DIPG Angels, formatted specially for Childhood Cancer Talk Radio. Today we honor the following four heroes for kids starting with the ongoing work of Kristen Gillette, with the Kortney Rose Foundation in Oceanside, NJ. An original and continuing supporter of the Children’s Brain Tumor Tissue Consortium, we honor today the life of her uniquely bright and sweet daughter Kortney. Jenny and Mark Mosier, with the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, and their crucial contributions to DIPG research as well as their DIPG Across the Map Campaign to have May 17 recognized as DIPG Awareness Day. Today we honor the life of their son, Michael who inspired this movement. Bonnie Woodworth in Brandon, FL serves as is a Board Member and Legislative Director for 1Voice Foundation in Tampa, Fl; she is the Communications Director for the American Board of Pathology, and has provided editorial assistance to the Alliance for Childhood Cancer. Today we honor her beautiful daughter Tatumn. And finally, Sam and Richard Perkins, long-time advocates for the National Brain Tumor Society and the Alliance for Childhood Cancer, join us to share with us memories of their son Sam, a gifted musical artist and an exceptionally kind and gentle soul.
Mithil Prasad Foundation, with Rachna Prasad
The sibling perspective on childhood cancer is often the least recognized; our guest Rachna Prasad is an example of hope, inspiration, and dedication to a greater purpose. Her brother Mithil was afflicted with DIPG, the second most common and the deadliest pediatric brain cancer. As Vice President of the Mithil Prasad Foundation, and her work helping other cancer siblings with the Pediatric Brain Tumor Foundation, Rachna is an agent of hope within the DIPG community. The Mithil Prasad Foundation is dedicated to supporting DIPG research and patients. It was formed in honor of Rachna's brother Mithil Prasad who fought a fierce battle against DIPG with his diagnosis in 2015. During his fight, Mithil always told his family how they should help kids just like him. Since his death, the Mithil Prasad Foundation has raised close to $250,000 for DIPG research and patient care, funding 3 clinical studies and supporting over 40 patient families. Rachna will be graduating from UCLA this June with a BS in anthropology, and is preparing to begin a masters in cancer biology this fall at the University of Zurich, with the goal of becoming a physician researcher. She is currently planning to launch a podcast called "Hear the Rare" to raise awareness for all aspects of the DIPG experience, and foster a sense of hope for all affected by this terrible disease.
Tribute to DIPG Children Part I
The year 2020 marks an important breakthrough for childhood cancer awareness with DIPG, perhaps the deadliest pediatric brain cancer. To commemorate DIPG Awareness Day, May 17, 2020, Tammi Carr(Ann Arbor MI), Ana-Mari Carr (Miami FL), Ellyn Miller (Leesburg VA), Margie Akehurst (Broken Arrow, OK), and Denica Harden (Gresham, OR) share about their precious children who lost their lives to DIPG, a merciless disease. While retaining full cognitive ability, DIPG takes away the use of children's bodies until respiration ceases, as their parent witness this in complete helplessness to save them. There has been no change in the standard treatment of radiation and palliative care since Neil Armstrong's daughter Karen died of it in 1962. With Part I we honor Chad Carr, Dean Carr, Bailey Dodson, Levi Harden, and Gabriella Miller.
Ellyn Miller and Jill Morin on "Kids First!" #GMKF
The Gabriella Miller Kids First Research Act 2.0 was introduced in a bipartisan way on April 17, 2020. The original bill signed by President Obama in 2014 established a special fund and database with NIH for childhood genetic diseases and childhood cancers, an area of research which has been historically underfunded. Learn how you can support this crucial legislation which allocates funds in a most creative way; without using taxpayer dollars, it accesses an unused fund of pharmaceutical company penalty fees. Tips on twitter and advocacy with Jill Morin, of Luke's Posse in Denver, CO, and Ellyn Miller of Smashing Walnuts Foundation in Leesburg, VA.
#BrainTumorAwarenessMonth: Florida Advocates Prevail for DIPG Awareness
Ana-Mari Carr (Miami, FL) and Bonnie Woodworth (Brandon, FL), an experienced advocate and legislative director of 1 Voice Foundation, join us to discuss their vocational work as advocates for children with cancer--notably DIPG and pediatric brain cancer. The Florida contingency of advocates with DIPG Advocacy Group this year helped to ensure that S. Res. 587, the National DIPG/Pediatric Brain Cancer Awareness Resolution passed the Senate, and that the House Resolution or #Moonshot4Kids, H. Res. 114, got several more Florida representatives signed-on in support. We were joined by Christina Wascher, also from Miami, and Director of the "All in to Win" Foundation, who was an equally strong force in the group. Both Ana and Bonnie lost their children Dean and Tatumn, respectively, to DIPG, and Christina is a long-time DIPG advocate and foundation leader as a concerned citizen. They share their different experiences and serve as an example of how to work together as a group to raise awareness to the urgent, unmet needs of children with brain cancer in our society today.
NBTS Head to the Hill with Lainey Samant and Jenica Castillo-Harden
Lainey Titus Samant is the Director of Government Relations at the National Brain Tumor Society. Lainey oversees NBTS’s grassroots advocacy program that includes volunteer brain tumor advocates across the country and also works with the rest of the government relations team to monitor and influence legislation and appropriations that affect the brain tumor community. This year's NBTS "Head to the Hill" event will be conducted virtually due to the Covid-19 pandemic; each part of their "ask" of Congress, or support for policy and legislation, impacts the childhood cancer community from NIH/NCI to funding for the Childhood Cancer STAR Act and the Department of Defense’s Peer Reviewed Cancer Research Program. Jenica Castillo-Harden joins us from Gresham OR to share her story of advocacy with National Brain Tumor Society; her son Levi was afflicted with DIPG and lost his life to this deadly pediatric brain tumor, as brain cancer is the leading cause of cancer-related death in children. Jenica shares why Brain Tumor Awareness Month is so important for kids with cancer, and about her joining the fight to advocate for House Resolution 114 which designates May 17 to honor children with brain cancer with DIPG Awareness Day.
Living the Dream with Grace Wethor
Grace Wethor is an 18-year-old actress, model, and author based in Los Angeles, CA. After being diagnosed with a brainstem glioma at age 13, and given an 8% chance of survival over 6 months, she moved to LA and started pursuing her dreams. Since then she has spoken about her diagnosis in a TED Talk and released her bestselling book titled "You're So Lucky". She is still fighting her tumor but truly believes that sharing her experience can help others be inspired to pursue their goals no matter their situation or illness. Grace's optimism is healing, and perspective on life, creative and pragmatic. With an unquestionable foundation of real experience facing terrible odds, her experimental approach to life and hopeful curiosity has the potential to help us all in these uncertain times.
In Texas Style: Annette Leslie Raises the Bar for Funding Childhood Cancer Research
A definite perspective emerges on what has become the Childhood Cancer Awareness Movement from one of its most influential advocates and supporters. Annette Leslie’s son, Carson Leslie, was afflicted with medullobastoma; before perishing to the disease, he wrote a book called “Carry Me” to give the benefit of his experience and what he learned to others who would come after him. After reading the book in 2010 shortly after Carson passed away, Congressman Michael McCaul (TX-10), Founder of the Congressional Childhood Cancer Caucus (CCCC), invited Annette to speak at the inaugural Childhood Cancer Caucus meeting in his Washington, DC private home. The rest is not only history, so to speak, but an amazing journey of discovery, teamwork and partnership between Congress, childhood cancer advocates, and the cancer research community. The Carson Leslie Foundation and CPRIT partnership has increased the level of designated CPRIT funding for pediatric cancer research three-fold. The Cancer Prevention and Research Institute of Texas is second only to the Federal Government in its funding for cancer research in the United States.
The First Ladies of Data, with Ellyn Miller and Amanda Haddock
Today's show features groundbreaking innovation for our medical research system to better accommodate the research needs for childhood cancer, inspired from the experiences of both of our guests who witnessed the urgent, unmet needs of children with brain cancer. Amanda Haddock's son David lost his life to glioblastoma. His fight inspired the beginnings of DragonMaster Foundation (KS), for which the pilot project was to build an open access, collaborative, multi-institutional research infrastructure with high quality informatics and data to empower the next wave of precision medicine approaches for cancer therapeutics. Today this is known as Cavatica, a cloud-based environment for securely storing, sharing and analyzing large volumes of pediatric brain tumor genomics data. Ellyn Miller, president of Smashing Walnuts Foundation(VA), was equally inspired by her daughter's journey with DIPG, a walnut-sized deadly tumor in her brainstem. Ellyn describes how her daughter's advocacy for other children with cancer in a public spotlight helped attract the help of key lawmakers to introduce the Gabriella Miller Kids First Research Act, signed into law by President Obama in 2014. This legislation initiated the Kids First Pediatric Research Program with NIH, a large-scale data resource to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders.
A New Day for Pediatric Brain Cancer Research
Dr. Michael Prados (UCSF), lead scientist with PNOC (Pacific Pediatric Neuro-Oncology Consortium) and Dr. Adam Resnick (CHOP), leading scientist with the CBTTC (Children's Brain Tumor Tissue Consortium) share important developments in pediatric cancer research and also a potential shift in the way research is conducted, and funded, particularly with regard to a novel NIH/NCI SPORE grant. The field has been to date funded almost entirely by the collective resources of parents and other philanthropists familiar with its challenges. Amanda Haddock of DragonMaster Foundation joins the discussion in the second half to speak to data resources and the sharing capabilities of Cavatica.
Children's Brain Tumor Foundation with Kayla Giacin
Kayla Giacin, Manager, Quality of Life Programs and Marketing for Children's Brain Tumor Foundation shares about upcoming events and current programs. Children's Brain Tumor Foundation's mission is to improve the treatment, quality of life and the long-term outlook for children and families affected by a brain or spinal cord tumor. During its 31-year history, CBTF has awarded over 75 research grants totaling $10.5 million to leading doctors and researchers at top institutions throughout the United States. Alongside CBTFs commitment to research, Kayla Giacin explains in depth the support programs for survivors that "change lives," bereavement support, camps for families and upcoming events providing opportunities to support the work of CBTF.
Defying the Odds: Anjalie's Miraculous Journey
Anjalie Bartee was a normal, healthy junior in high school in Omaha, NE when she began experiencing headaches and vision changes. The condition persisted and worsened, and an ophthalmologist detected pressure on the brain and sent them to the ER at their local children's hospital. The diagnosis was a brain tumor, diffuse midline glioma (DMG); she was given a few months to a year, maybe two if lucky, to live. After the standard 6 weeks of radiation, the tumor's growth was not deterred; her condition was not temporarily improving as hoped. Her physicians were aware of the clinical trial with ONC201, and had Anjalie begin within a month's time; she continues to participate, now 19 months later, and is doing well. Anjalie and her parents join us to share the details of their journey together, and hopeful plans for the future.
Quinton's Messages with Author Ernie Jackson: From Grief to Joy and Back Again
Whether it's from a pediatric cancer or a freak accident, the loss of a child is perhaps the most devastating experience imaginable. Ernie Jackson, author of Quinton's Messages and Quinton's Legacy, lost his son Quinton to an accident and shares how he gained a constant and very real companion in faith. He shares this gift with others as a Board member and monthly columnist for the non-profit Helping Parents Heal.
#DIPGwontWait with Lisa and Jace Ward, DIPG Advocacy Group
DIPG Advocacy Group co-founders Elizabeth Psar and Paul Miller join us to help give the background story to the group, how it formed and why; Also joining us is Lisa Ward, a new addition to the Admins of DIPG Advocacy Group, who’s son Jace Ward, a 20 year old pre-law student at Kansas State University, was recently diagnosed with DIPG. Their ongoing journey has been central to this group’s petitioning for a Congressional Briefing, as Jace prepares to speak before Members of Congress and staff to the urgent need for greater awareness and research activity and collaboration for the deadliest pediatric cancer.
Lady Bug House, Adding Life to Days with Suzanne Gwynn
"If we cannot add days to the life of a child, we will add life to their days," Suzanne Gwynn, nurse of 40 years, founder of LadyBug House. As a nonprofit, Ladybug House will offer intermittent stays to families who are caring for their children with life-threatening illnesses so they can have time for rest and quality time together. This care will be provided with no out of pocket cost to the family. "Family moments don't end because visiting hours are over."
Bryanna's Love; A Legacy of Hope with Kristena Kitchen
Bryanna’s Love was founded in honor of Bryanna Kitchen, who was diagnosed with Early T-cell Precursor Acute Lymphoblastic Leukemia (ETP-ALL) only 3 weeks after her 9th birthday. One of the few things that gave her the strength to smile during this time was the many stuffed animals and the blanket she received, and of which stayed on her bed throughout treatment. It is through that experience, that Bryanna’s Love, Inc will provide the same comfort to the patients and families battling childhood cancer.
First Ascent Biomedical with Noah Berlow, Ph.D.
Noah Berlow received his PhD in electrical engineering following undergraduate studies in electrical engineering, computer science, and mathematics. His graduate work grew into a long-term collaboration with Dr. Charles Keller, then at Oregon Health & Sciences University. Upon graduating, he joined the non-profit mission-based biotech start-up, the Children’s Cancer Therapy Development Institute as a postdoctoral fellow in bioinformatics and molecular biology, with the goal of turning his research on personalized combination cancer therapy into a clinical tool to help cancer patients in need. This goal became his own start-up, First Ascent Biomedical, with the mission of making combination cancer therapy rapid, affordable, and personalized to the individual patient. “No one should ever run out of options in the fight against cancer.”--Noah Berlow Ph. D
Goodbye Little Dude, with Rebecca Trotsky and Marie Smyth
Goodbye Little Dude is the remarkable story about seven-year-old Jonathan, his classmates, and a pet turtle named Little Dude. While Jonathan is unable to care for his beloved turtle on his own, Little Dude thrives and grows under the tender care of Jonathan’s classmates. Together, they all learn that kindness, hope, and love are part of saying goodbye. The author, Rebecca Trotsky, gives us the background and details surrounding the creation of this special book with Marie Smyth, Jonathan's mother, who both join us for the show. The manuscript laid in waiting for nearly two decades before it found its day, but Jonathan's legacy, in a powerful metaphor with Little Dude, lives on in its life lessons for adults and hopeful comfort for children who have endured, or who are enduring in real-time, the pain of loss.
Dr. Vibhakar at Children's Hospital Colorado; Morin Family Braves the Holidays after Recent Loss
Jill and Cam Morin join us once again to share the success of their recent event, the Goddard Cares Fall Fest 5K in Denver, raising over $20,000 for pediatric brain cancer research at Children's Hospital Colorado. On April 8, 2018, Luke’s family had received news that there was an inoperable and aggressive tumor in his brain called DIPG, diffuse intrinsic pontine glioma. After two radiation attempts and seventeen days later, Luke lost his battle; he was only 5 years old. Thus began the Morin family’s journey with “Luke’s Posse,” dedicated to funding pediatric brain cancer research at the University of Colorado, Denver. Jill and Cam Morin also discuss the challenges of adjusting to a new reality without Luke being with them during the Holidays, along with host Janet Demeter who is now 7 years past losing her son Jack to the same disease. All those in our bereaved community are encouraged to reach out to helpful organizations in moments of need, such as GriefShare and Compassionate Friends.
Oncoheroes: Advancing New Therapies for Childhood Cancer
Ricardo Garcia, CEO, Cesare Spadoni, COO, and Jonathan Agin, Head of Patient Advocacy for Oncoheroes Biosciences join us to discuss this relatively new biotech company, founded in 2017, and it's unique and thoughtful approach to childhood cancer research. The families of each of the three gentlemen have each been affected directly by childhood cancer and the lack of adequate treatments developed for children. Oncoheroes Biosciences was formed, in fact, to confront the challenges of the current medical research system to addressing the needs of children in a comprehensive manner. First, their focus is to bring new treatments for children, specifically to the marketplace; second, research into subtypes is prioritized according to prevalence and mortality rate; third, they offer unique philanthropic opportunities of partnership and return on investment for non-profit and for-profit organizations. Learn about their recent success in signing an agreement with the pharmaceutical company Boehringer Ingleheim International for exclusive rights to develop the drug Volasertib. A drug originally developed for adult leukemia, Volasertib shows great promise in treating a number of childhood cancers, and is currently being developed to treat rhabdomyosarcoma.
No Time To Lose: Pediatric Brain Cancer and the DIPG Fast-Track with Lisa and Jace Ward
"While we wait," declared Jace Ward from Wamego Kansas, to an NIH Symposium on genomic data sharing in September, 2019, "DIPG won't wait! It won’t wait to take my mobility, my sight, my speech and my life…" With an extraordinary opportunity to shine a light on one of the darkest realms of pediatric oncology, Jace Ward, a young law student of 20 years, backed by his family takes on the burden of raising crucial awareness to the urgent, life/death struggle facing most all children diagnosed with diffuse intrinsic pontine glioma, the 2nd most common pediatric brain cancer. Jace takes us through this journey with pediatric brain cancer, the leading disease-related cause of death in children in the USA, in real-time; his mother Lisa shares the reality with which families are invariably confronted, mostly in obscurity. The most promising treatments for DIPG are currently funded by parent-led foundations and for which participation is exceedingly difficult to qualify. We learn about Jace's fight for ONC201 to be available to more children facing DIPG and midline glioma, and the campaign for a hearing with the Health Subcommittee of Energy and Commerce, to bring attention to this issue of urgency to our lawmakers in US Congress.
Creating Hope: Kids V. Cancer, Game Changer for Pediatric Cancer Research
Today's show features Nancy Goodman and Kids V Cancer, the notable leader in childhood cancer advocacy and legislation in the United States. Nancy wrote the Creating Hope Act of 2012, which has created over $1B in funding for pediatric cancer research in the private sector with the Pediatric Priority Review Voucher program. We discuss also the Race for Children Act of 2017. Nancy lost her son Jacob to medulloblastoma in 2010 because there were no cures available for him, and she was uniquely driven to solve this problem. Learn how these bills work, how you can support their ongoing contributions to changing the landscape of pediatric cancer research, increasing funding for cures for our children with cancer. Nancy also shares about Kids V Cancer "Climb the Hill" days for children to advocate for their peers on Capitol Hill, a unique opportunity for young people to learn about participation in our representative democracy.
Luke's Legacy at Children's Hospital Colorado
From Denver Colorado we bring to you Jill and Cam Morin, who established in their son Luke’s honor a fund for DIPG Research at Children’s Hospital Colorado raising over $230,000 at 22% of their goal. They are gearing up for the Goddard Cares Fall Fest 5k in honor of Luke Morin; sadly, Luke passed away in 2018 just 17 days past diagnosis, of the deadly DIPG, diffuse intrinsic pontine glioma. Dr. Rajeev Vibhakar, at Children’s Hospital Colorado works along with Dr. Adam Green and others on the cutting edge of cancer research with a laboratory devoted to finding solutions for DIPG. Their work is funded mostly by parent-led foundations. “Philanthropy is the foundation for all the research that we do here; without donors, our work simply wouldn’t be possible. With continued support, I know we can change the outcomes for these kids."
DIPG Advocacy Group DC Trip Report for 9/2019
DIPG Advocacy Group Founders Paul Miller of Littleton, CO and Elizabeth Psar of Knoxville, TN come together with host Janet Demeter to discuss progress made in their advocacy for families around the US affected by DIPG pediatric brain cancer, on their most recent trip in September 2019. Hear about the Hearing Request for Jace Ward and H. Res. 114, and the next steps for DIPG Advocacy Group in raising awareness for the deadliest childhood cancer and the fact that childhood disease research is not adequately supported by the system in place.
The Story Behind The Fairness to Kids with Cancer Act of 2019
On Friday, Sept. 20 this new bill, H. R. 4429, the Fairness to Kids with Cancer Act of 2019, was introduced to the House of Representatives by Brian Fitzpatrick of Pennsylvania's 1st District. Two years prior the Congressman had attended a gala hosted by Storm the Heavens Foundation in Philadelphia, PA, with Executive Director Mina Carroll. He was strongly affected by the eloquence of Mina's speech about the merciless killer DIPG, diffuse intrinsic pontine glioma, and the fact that our federal government on any given year over the last decade has directly purposed less than 4% of its cancer research budget to pediatrics. As a result, deadly and prevalent pediatric brain cancers like DIPG have had no progress in standard treatment nor terminal prognosis for decades. The gist of her message is that we must do better for our children, and she challenged the lawmakers in attendance to do something about it! Steve Healey, CEO of the Brooke Healey Foundation in New Providence, NJ joins us also, as he has played an important role in the creation and ongoing support for this important new bill. Congressman Fitzpatrick joins us during the 2nd segment to share about the conception of the legislation, it's specific vision of fairness in policy, and his hopes for inspiring support for this cause in the childhood cancer community.
Childhood Cancer Caucus Summit 10th Anniversary Special Edition
Thursday, Sept. 26 show features interviews with key individuals with important information about CureFest, the rise of childhood cancer awareness, and issues facing childhood cancer families today. The episode marks the passing of the 10th Anniversary of the Childhood Cancer Caucus Summit, to which Congresswoman and Co-Chairman Jackie Speier (CA-14) shares her experience; Donna Speckard, producer of The Promise docuseries witnessed the beginnings of CureFest, and comments on progress made in our community since then. We also visit with Annette Leslie of the Carson Leslie Foundation, hosting the one and only "Golden Toast" event preceding the 2019 Caucus Summit, and Jace Ward, a 20-year old law student afflicted with DIPG, along with his mother Lisa Ward.
Swifty Foundation's "Gift from a Child" Program with Al Gustafson
Al Gustafson is back! The Swifty Foundation was created to celebrate the life of Michael Gustafson who died in 2013 at the age of 15 from brain cancer. Prior to Michael’s death, his parents decided to use the money they would have invested in Michael’s life, for education, support, and inheritance, and start a foundation. Michael was charged with choosing the mission and name. The focus of today’s show is the Swifty Foundation's program called "Gift from a Child", a national initiative of families, foundations, researchers and the institutions they are apart of, to better facilitate and help educate the public about post mortem tissue donation. Born out of Michael’s donation experience, the Swifty Foundation has been the catalyst and primary funder of this program. The web address is www.giftfromachild.org; some of the foundations involved with Gift from a Child you might know are McKenna Claire, Unravel Pediatric Cancer and Live Like John. The Monje Lab at Stanford, Lurie Children’s Hospital, CHOP and Children’s National in DC, are also participating currently.
"Fry and Die, AML!"-with Julie Guillot and Michael Copley
The title of our podcast is a loving tribute to our guest's son Zach's spirited and inspirational fight against Acute Myeloid Leukemia. From TARGET Pediatric AML to the new Children's Initiative with Leukemia Lymphoma Society, this literal AML dynamic duo, Julie Guillot, patient advocate, and Michael Copley, national chairman of the Harry T. Mangurian, Jr. Foundation -- Beat AML campaign, have created an unprecedented partnership to cure pediatric AML. They come by it honestly; each having suffered the intense grief of each having lost a precious child to pediatric AML, learn how they've succeeded from the humble beginnings of a grassroots "posse" of parents to lassoing the corporate giants to prioritize childhood cancer.
The House that Hope Built in Zurich, with Philip Manduca
Philip Manduca, a financier residing in London, UK, serves as treatment advisor with the DIPG Treatment Advisory Council, and has been instrumental to the development of the new, international treatment program for pediatric brain cancer at Zurich Children's Hospital in Switzerland. The program offers personalized treatments and multi-modality developments in the latest research in pediatric neuro-oncology, developed for diffuse instrinsic pontine glioma and midline glioma. Because of the controversial nature of experimental research and treatment for children, the program's development has been somewhat guarded from public view until now.
Move the Mountain with the 2019 Hood-to-Coast Relay
The Hood-to-Coast Relay 2019 quickly approaches (August 23-24) and for this special event we are hearing from the MaxCure Foundation Team and beneficiary, the Children's Cancer Therapy Development Institute (cc-TDI). Jonathan Agin, Executive Director of the MaxCure Foundation joins us in the first segment, giving background to the childhood cancer awareness movement and the urgent need for greater funding of research activity into childhood cancers. Brian Jones, ultra-distance runner activist for children with cancer, and founder of the Run for the White House phenomenon on Facebook, leads the MaxCure Team in its quest to raise funds for a special project for pediatric AML(acute myeloid leukemia) at cc-TDI, a non-profit biotech in Beaverton OR specializing in finding viable treatments for pediatric cancers of all kinds. Scientific Director Dr. Charles Keller tells us about the project and also the involvement of an 8th grade science class with the Institute in this special venture with MaxCure Foundation and cc-TDI.
Kier's Kidz and Songs of Love
Larry Perfetti, President of Kier's Kidz, a 501(c)3 charitable organization in Highland Park, NJ, dedicated to helping children with cancer and their families and supporting childhood cancer research, joins us along with Caroline Kratka, Genetics major at Rutger's University Honors College, who serves on Kier's Kids Advisory Board and shares about youth engagement and advocacy with the foundation. Kier's Kidz was inspired by the hopes and dreams of Larry's daughter Kiersten who succumbed to alveolar rhabdomyosarcoma when she was just 22. Songs of Love President John Beltzer also joins us to share about the healing gift of music that is his organization's mission, also a 501(c)3 charity, dedicated to uplifting the spirits of children with life-threatening illness or permanent disability. Artists from around the world create professionally produced songs in the child's favorite genre, including aspects of the child's life, hopes, dreams, and likes. Beltzer's work is inspired by his musically talented twin brother, Julio, who died in 1984.
The Pepper-Neely Act of 1946 and the Fitzgerald Report of 1953, with Randy Hinton
How did we get here, with a medical research system teaming with money and activity, but so few solutions and options for deadly cancers, especially pediatric cancers? Randy HInton, of Cross Hill South Carolina, is a childhood cancer advocate and father to Hayley who died of DIPG in 2006, diagnosed in 2005 at just 5 years of age. He brings us an in depth report of the early years of the AMA, drug companies, and the doctors who would not be bought.
Meet "Tattoo Tom" Mitchell: Father, Activist, Founder of Still Brave Foundation
Following the death of his daughter Shayla in 2009 from Hodgkin’s Lymphoma Tom dedicated his entire life to providing non-medical support to children with cancer and their families. He’s also committed to raising awareness of the need for more research funding and safer, less toxic treatments for children with cancer. An extreme runner, he completed a 200 mile run at Lake Tahoe in 2015, and has been featured in an award-winning documentary and Emmy-winning news stories of his exploits. To date he has raised over $800,000 for Stillbrave just through his ultrarunning endeavors. But on a regular day, you’re likely to find him on a personal visit either at the chemo clinic or at a child’s bedside, or on the streets of Washington D.C. carrying a sign, loudly and unapologetically vocal about what matters most, awareness for our children with cancer and the urgent need for solutions for them. Get a sneak-peek at his upcoming 200 miler in Washington State where he will be accompanied by a childhood cancer survivor to make "Team Two-Feathers" for StillBrave Foundation, and take heart in a personal story of transformation and hope.
To the Ends of the Earth: Juju's Journey with Mark Hyde
Our show features a window into the experience of a father, Mark Hyde, who literally chose to go to the ends of the earth for his daughter, honoring her life with a journey to the north pole. While she was fighting rhabdomyosarcoma, Juliet went with her dad, sister, and mom on quick, day-trip excursions into the beautiful German countryside, as time and hospital proximity would permit. Mark had been contracted to work in Germany at the time, having come from California. Upon their return, however, the effects of her cancer took another turn. Featured also is cc-TDI, Children's Cancer Therapy Development Institute led by Scientific Director Dr. Charles Keller, in Beaverton OR, and the innovative, child-centric research funded mostly by parents, which serves as a beacon of hope for thousands in the childhood cancer community worldwide.
A Family Affair: Kendal Brown and her Family in South Carolina
Sandra Brown joins us on Childhood Cancer Talk Radio from Dillon, South Carolina to share the story of her beautiful, 10 year old granddaughter who is fighting brain cancer like a champion. Involved in an ongoing clinical trial for DIPG, Kendal was an honor student this past year, and is an All-Star softball player. Not only do we hear from her grandmother, but we are fortunate to hear from Kendal herself about what life has been like for her. We also hear from her mother, Amber Gaddy, who shares the challenges of pediatric brain cancer.
From Advocacy to Activism: DIPG Advocacy Group Salutes Cannonballs Across America
May 2019 has witnessed important advances in pediatric brain cancer awareness, advocacy, and the fulfillment of a life-time dream by a dedicated brother and his friends for Kayne Finley of Ormond Beach FL, deceased 18 months ago to DIPG. DIPG is the second most common but deadliest pediatric brain cancer, and has been instrumental, for all of its horror, to raising awareness to the urgent needs of children with cancer for research into cures. Cannonballs-Across-America is a coast-to-coast cycling event to raise funds for pediatric brain cancer research in honor of Kayne Finley, a kind young man dedicated to his faith that one day, we will find a cure for DIPG. DIPG Advocacy Group members Paul Miller, Elizabeth Psar, and Wendy Fachon share their experience in seeing the first National Awareness Resolution for DIPG pass the Senate.
Interning at Children's Cancer Therapy Development Institute
Cynthia Martucci and Angelina Shao begin internships at cc-TDI, Children's Cancer Therapy Development Institute as undergraduates for the summer of 2019, and we learn about their projects, mentorships, and what it is like to work as a scientist in a progressive biotech lab devoted to pediatric cancer research. Cynthia Martucci just finished her Freshman year and is assisting with the DIPG Tumor Cell Hotel project, her work mainly devoted to materials discovery merging oncology with biomechanics at the molecular level. Angelina Shao just completed her junior year in college, on a medical path, and is exploring the effects of a multiple array of therapies on different pediatric cancer cell lines, including clear cell sarcoma.
Truth in Pictures, Reality in Words: The Extraordinary Photo-Journalism of Moriah Ratner
A recent graduate of Syracuse University's School of Photo-Journalism, Moriah Ratner tells the story of the lovely Lola Munoz, a thirteen year old girl afflicted with the deadliest pediatric cancer, DIPG, published within the last year, is truly a work of distinction. Moriah shares with us the process of discovery in this work, as it began simply as the protocol for a class she was involved in--to tell the story of a person. Already attracted to the resilience of young people who have experienced great trauma from her psychology studies, Moriah began this journey with a referral from Make-A-Wish Central New York, unaware of the human drama she would experience and share with the world as a result. She made it her duty to ensure Lola's legacy would endure with grace and integrity, defying stereotypes of pediatric cancer and, most importantly, to create awareness with "the hope of stimulating a call to action." The story has been published in the Washington Post, National Geographic, and NPR. Debuting this week is also her first videography project about Vivian Rose Weaver Defeat DIPG Foundation in Washington state, also a story about the journey of young Vivian Rose battling DIPG, a production of Oregon Public Broadcasting Network (OPB).
Love for Olivia, A Legacy of Hope
Chance Mazzell and his wife Heather share with us the story of their daughter Olivia and the places DIPG, diffuse intrinsic pontine glioma, has led them. Olivia was diagnosed with DIPG on August 28th of 2018; her journey was particularly difficult out of the gate. The Mazzells, from Lexington, South Carolina, are extremely brave to give us this insight into their lives at a most difficult time. Sadly, Olivia passed away in February of this year, before she had the chance to even try ONC201 a medication showing promise in extending the lives of some patients. Chance and Heather bring her legacy to life with their efforts to help make access to promising, experimental medication possible for others in the future.
Sara's Cure Has Hope with CC-TDI's Lissett Bickford Ph.D.
Sara’s Cure is a grassroots, race-against-time campaign focused on funding critical research to find a cure for Clear Cell Sarcoma. Lissett Bickford, now with Children's Cancer Therapy Development Institute, a non-profit biotech company in Beaverton Oregon dedicated to eradicating childhood cancer, earned her PhD in Bioengineering at Rice University in collaboration with MD Anderson Cancer Center where she developed rapid nanoparticle-based assays for cancer detection. Lissett’s long-term career goal is to make significant contributions in translational medicine by examining limitations to current practices and designing feasible studies and technologies to address these limitations. Episode 4 of our research series investigates how the parent-led organization of Sarah's cure works with cc-TDI to find solutions for clear cell sarcoma.
Dogs Prove to Be Kids Best Friend, with Dr. Bernard Seguin and Ulrike Szalay
According the the Genomics Institute, 84% of dog DNA has human counterparts, so we suffer many of the same diseases, including most cancers. Dogs have a higher incidence of certain tumors which are considered rare in children. By studying these tumor types in dogs, we can learn a great deal about these devastating cancers, while also helping canines to beat their cancers. Our first guest is Dr. Bernard Seguin DVM, surgical oncologist and Associate Professor of Surgical Oncology at Colorado State University with a focus on osteosarcomas and limb-sparing surgery. He shares with us the high rate of cancer incidence in our canine friends, and how the specialized research for dogs is helpful to pediatric oncology. Ulrike Szalay, President of Canines 'n Kids Foundation in Virginia joins us during part II to share about her passion for translational research, and the shared unmet need of adequate research activity and funding for both pediatric and canine cancers.
Colorado Treasures: The Morgan Adams Foundation and Cops Fighting Cancer
Denver CO--Morgan Adams Foundation co-founder Joan Slaughter joins us to share this organizations 20 year history of advancing the clinical trial process for pediatric cancer in the medical research system. Her daughter Morgan had been diagnosed at 5 years old with GBM in 1997, surviving 11 months past the diagnosis before succumbing to the deadly disease. The Morgan Adams Foundation funds research critical to progress in pediatric neuro-oncology, one of the scientific worlds most challenging frontiers. Partnering organization Cops Fighting Cancer, founded and led by Officer James Seneca, AML survivor, of Aurora P.D. in Colorado, worked with the Colorado legislature to create a childhood cancer license plate to support the research of Morgan Adams Foundation, and the family support for Cops Fighting Cancer. This organization, founded in 2002, has grown into a large coalition of Colorado Police Departments raising funds for kids with cancer and their families, and creating events to bring smiles, laughter, and leadership for the kids, their favorite heroes.
Research Edition #3: Hepatoblastoma and the Foundation for Addie's Research
After months of frustrating ER visits for high fevers, Adelaide 'Addie' was diagnosed in November 2015 with Hepatoblastoma, a rare pediatric liver cancer; it was just four days before her 2nd birthday. Addie fought a fast-spreading disease with grace; she shared her contagious smile and joyous spirit with everyone she met, even during the most difficult treatments. Her parents, Christina and Cody Stiverson, join us to discuss their experience and the progress of the Foundation for Addie's Research, currently funding a project for hepatoblastoma at Children's Cancer Therapy Development Institute. We hear first from Dina Kats, researcher and project leader at the Institute. Before joining the team, Ms. Kats received her bachelor’s degree from UCSD and her Masters in Biology from Northwestern University in Chicago, IL. During her time at Northwestern, Dina focused on developing a tuberculosis vaccine using nanoparticles. In her own words, “I am excited to continue research that will help impact lives with cc-TDI!”
Bill Kohler: When Suddenly There's No Time
From a State Tax Measure bringing needed funds to pediatric cancer research, to leading in the country-wide movement for a DIPG Awareness Day, Pennsylvania is leading in authentic grassroots advocacy for children with cancer and their families. Bill Kohler is a highly respected and decorated veteran of the Iraq war, father, and now Executive Director of 4AydenStrong Foundation. He shares the story of his son Ayden, his tragic loss to pediatric brain cancer, and the continuing fight against time for all childhood cancer families as one of our country's foremost advocates.
Barbara Salzman and The Jester
Barbara Saltzman joins us from Palos Verdes CA, home of The Jester & Pharley™ Phund, the charity that grew out of her late son David’s best-selling children’s book, "The Jester Has Lost His Jingle." David created The Jester as his senior project at Yale before his death from cancer in 1990 at 22. David's book has been making a difference in thousands of children’s lives for 23 years. Founded in the year 2000, the non-profit Jester & Pharley Phund developed from the overwhelming national response to the illustrated children's book, which was David's senior project at Yale. Before his death from cancer at the age of 22 in 1990, David's family promised him that his book would be published as he had envisioned and that its universal message of hope, laughter and self-empowerment would be shared with children coping with cancer and other illness. The Jester and Pharley Phund's programs for literacy and ill children have received multiple honors of national acclaim over the last 23 years.
Research Series Part II: Osteosarcoma and the Trey Foote Foundation
The second edition of Childhood Cancer Talk Radio's Research Series with Children's Cancer Therapy Development Institute features an osteosarcoma research project directed by Jin-ah Kim PhD. Originally from South Korea, Kim describes her education experience, vocational direction to cancer research, and the unique challenges and goals for the project. The second half of the show features the inspiration behind the project, which is funded by the Trey Foote Foundation of Vancouver WA. James and Leah Foote, Trey's amazing and positive-minded parents, describe their experience with their son and his fight with osteosarcoma. His parents approach to life reflect their son's positive attitude toward life and to be happy living as large as possible. His mother Leah exemplifies this ideal with the motto, "Happiness is a choice, so be happy," continuing her love of working with children at Seaton Catholic College Preparatory School in Vancouver, WA. Jim Foote, a career executive in IT, Operations and Research and Development, prides himself as a problem solver determined to eradicate cancer.
The Urgency of Need: Awareness and Research for Pediatric Brain Cancer, with Steven Healey
Steven Healey shares the inspiration behind the foundation, his beautiful, forever-5 year old daughter Brooke who's life lasted just eight months post diagnosis of DIPG, a deadly pediatric brain cancer. Healey describes the harrowing experience as a parent, but also about a new-found community of families dedicated to funding research for the devastating disease, the DIPG Collaborative. The importance of awareness to an industry which categorically ignores the most vulnerable and those most needy of a cure, placing the burden of funding on to bereaved families, is an actual experience for parents familiar with DIPG and most pediatric cancers. The Brooke Healey Foundation will host their fifth annual Casino Night on Friday March 8, 2019 at the Palace at Somerset Park located at 333 Davidson Ave., Somerset, NJ 08873. Registration starts at 6:30pm for this community favorite.
Kirah: One Dad's Journey from Cradle to Legacy
Clayton Zook shares the story of his beautiful daughter Kirah, their journey with CMMRD, childhood cancer, and her legacy of music. Hear their story in simple, personable conversation, of love, honesty, and new commitment to life and learning, and valuing the heart's calling above all else. Spoiler alert! You'll hear the first release of Detroit's shining star, Kirah's song, "Sway," at the end of the podcast. From longterm misdiagnosis to finding their crusaders at Sick Children's Hospital in Toronto, Clayton Zook dedicates his life's work to his daughters legacy, and supporting research with her music.
CC-TDI Research Series I: DIPG Tumor Cell Hotel
Dr. Charles Keller, Scientific Director of the Children's Cancer Therapy Development Institute, joins us with Dr. Anju Karki, post-doctoral fellow and DIPG Tumor Cell Hotel project leader describe this creative design to affect a real solution for children diagnosed with arguably the deadliest pediatric brain cancer, diffuse intrinsic pontine glioma. Based on the concept of the humorous commercial in 1978, the Black Flag Roach Motel, where 'roaches check-in but they don't check out," the project is designed to attract and then disempower the tumor cells with a specially engineered "film" surgically implanted in a high-risk procedure. As with all other projects in the 2019 CCTR Research Series, the DIPG Tumor Cell Hotel is funded by a parent-led organization, and in this case, Storm the Heavens Fund of Philadelphia, PA. The 2nd half of the broadcast features Executive Director Mina Caroll who lost her 8-year-old daughter Philomena to DIPG in 2016, in a frank discussion about the unconscionable chronic lack of research funding and activity for childhood cancers, with DIPG treatment options seeing no meaningful change since Neil Armstrong's daughter Karen died of DIPG in 1962.
The Pediatric Cancer Research Foundation with Jeri Wilson
Jeri Wilson, Executive Director, has been with PCRF(Pediatric Cancer Research Foundation) since September of 2011 and has taken this organization from a $1.5 million dollar operating budget to a $3.5 million dollar organization. All while keeping 84% of the funding going straight to research. Since 1982, PCRF has partnered with businesses, foundations, and individuals to improve the care, quality of life and survival rates of children with malignant diseases, and has been directly instrumental in the development of life-saving therapies. Quietly and consistently PCRF has created a proven pathway to funding pediatric cancer research--Childhood Cancer Talk Radio's Hero of the Week!
Outside the Box Part II, Jessica Doeden DIPG Survivor, Randy HInton on Causes and Conditions
We follow-up and finish our conversation with Randy Hinton, father to Hayley who was diagnosed with DIPG (brainstem glioma-diffuse intrinsic pontine glioma) and perished to that disease some 13 years ago, regarding causes and conditions that remains the burden of parents to discover in their never-ending hunt for answers. We also discuss the world of alternative therapies and the difficulties families face when they wish to pursue treatments outside of the "box" of mainstream medicine. And then, we are joined by Jessica Doeden of Springfield, MO, a 34 year old survivor of the notorious DIPG, and hear about her success with the controversial therapy at the Burzynksi Clinic in Houston, TX.
The Children's Cause for Cancer Advocacy with CEO George Dahlman
As the Chief Executive Officer of Children’s Cause for Cancer Advocacy, George Dahlman is responsible for the strategic management and operations of the nation’s preeminent childhood cancer policy organization. Mr. Dahlman is responsible for identifying and advancing issues that will improve the treatment and lives of childhood cancer patients and their families with Congress, the Administration, federal agencies and state governments. He is also responsible for ensuring that families have the opportunity to participate as advocates in the policy process. Learn about the latest issues in policy facing a changing Congress, and how families of children with cancer can participate in the advocacy process to affect positive change in their experience and others with CCCA.
Outside the Box with No Return: the Extraordinary Story of Hayley Hinton
Randy Hinton joins us from Summerville SC to discuss the circumstances surrounding his daughter Hayley's diagnosis with brain cancer and the difficulties the family had in procuring effective and consolidated treatment for her. The controversial Burzynski Clinic in Houston TX takes center stage, as does Texas Anderson at Houston and the Children's Hospital in South Carolina where Hayley was diagnosed with diffuse intrinsic pontine glioma at the age of 5. Randy's experiences make clear 3 points of contention that many parents have with our medical research system: 1. numbers and profits rule, not saving lives 2. promising alternative therapies are dismissed and not investigated . 3. Actual cases of survival with alternative treatments are in some cases silenced and sent into exile, again without any investigation into causes and conditions of disease. A provocative discussion to say the least, please stay tuned for our follow-up show with Randy and an actual survivor of DIPG.
Every Voice Matters: The Power of Initiative in Advocacy
Wendy and Dean Fachon of Rhode Island join us to talk about state legislation, national resolutions and the legacy of their son Neil, making a strong case for "Right to Try." Paul Miller from Colorado shares about the power of social media and the magic of belief, with 2 successful campaigns granting the requests of children wanting to meet their heroes. Paul also has had a knack for blooming childhood cancer community facebook groups. Elizabeth Psar from Knoxville TN talks about bringing an experience of utter darkness national attention, and the beginnings of DIPG Advocacy Group. All of these differing experiences and the ideas thus inspired have found their common ground in a public request for greater research consideration for pediatric cancers, for which there are few, if any, actual solutions. See how a simple piece of populist legislation incorporates all of these efforts in the plea for national discussion and acknowledgment, and the pathway to a more responsive medical research system.
DIPG Reality and Research: Hopelessness and the Pathway to a Cure
Morally, rationally and in every sensible way, the experience of DIPG, diffuse intrinsic pontine glioma, inspires bereaved parents to fight for others and researchers to find a cure. Brain cancer is #1 in pediatric cancer incidence, and DIPG is the 2nd most common pediatric brain tumor. It's also responsible for the majority of pediatric brain tumor deaths annually in the United States. We visit first with DIPG parent Gerry Tye in Australia, who shares the impartial and devastating nature of the disease and all of its consequences, and how literally within days of his son being completely normal, he was given a few months to live. Talin survived only some few weeks past his diagnosis. Dr. Noah Berlow of the Children's Cancer Therapy Development Institute brings us the perspective of a scientist to the disconnect between the profit-motivated medical research industry and the real-time data on a ruthless killer of children which doesn't generally qualify for investment. Ultimately, the hopelessness of DIPG inspires its affected communities, civilian and scientific, to reach for a cure for cancer. Awareness is the key to progress and research into causes and conditions, and the moral imperative to prioritize urgency of need. When a death sentence prevails in young children for over 50 years, the collective agony of loss becomes a compelling force for change.
#PeytonManningMeetJackson
Jackson is a boy from Colorado fighting a devastating foe: DSRCT. Desmoplastic Small Round Cell Tumor (sarcoma) is a frequently misdiagnosed, rare pediatric cancer with only 200 known cases in the United States, and a poor prognosis. His father, Jason Frank, candidly discusses the monumental challenges confronting his family, and the less-spoken psychological realities that parents of children with cancer invariably face. Jackson's survival time is uncertain, though statistics indicate he may have less than 2 years; his dream is to meet his hero, Peyton Manning, retired star quarterback of the Denver Broncos.
"The Promise," with Donna Speckhard
Donna Speckhard brings us a sneak-peek of the upcoming docuseries "The Promise" chronicling the experiences of children with cancer and their families and shedding light on important issues that affect us all in the childhood cancer community. The lack of viable solutions for them poses the question, why it is that we must fight so hard for awareness of their suffering, and to justify greater investment into cures for our children? The lack of solutions for children with cancer makes this road extremely difficult for families to travel, with their lives forever changed, and nothing certain. Visit the unseen world through which families must forge new paths on the journey to survival for their children, and a better future for those yet to be diagnosed. The prologue with "Elizabeth's Story" is available for viewing on the series website, at www.thepromisedoc.com/watch. The series is currently in production.
A Closer Look with Ellyn Miller
The Gabriella Miller Kids First Research Act, first signed into law in 2014, is perhaps one of the most important pieces of legislation, and resulting research and data-resource programs for pediatric disease, to date. It begins to fill the void left by the industry of medical research and its biggest players: pharmaceutical companies, the larger cancer charities and research investors, and the NIH, when it comes to pediatric disease. All childhood cancers are considered rare with that label are immediately placed on a sort of indefinite hold of irrelevance. This new pediatric research and data-resource program at the NIH is the game changer for children who face deadly disease and an uncertain future. Ellyn Miller, mother of Gabriella who was diagnosed with DIPG--diffuse intrinsic pontine glioma--at the tender age of 9 and who died almost a year later in 2013, joins us to discuss developments in this program, it's Kids First 2.0 continuation, and Gabriella's legacy of strong advocacy for children with cancer and for the most relevant and transformative scientific research.
Why DIPG? The One to Beat from Awareness to Research
DIPG is front and center with researchers, devastated by the picture painted by the statistics of this killer of very young children, and with advocates who have been working for years to get a greater national conversation about the chronic lack of research funding for the deadliest pediatric cancers. DIPG reveals itself to be as mysterious and ephemeral in it's signature as the variances of individual fingerprints...and represents the frontier of our understanding of cancer, and the brain. It's also a ruthless killer of our children, and as the 2nd most common pediatric brain tumor, the only thing rare about it is the long-term survivor. In H.Res.69, DIPG acts as an ambassador for childhood cancer and the experiences that childhood cancer families endure when "the numbers aren't great enough for investors." It makes a strong case for urgency of need, and years of life lost, being a greater factors for research grant consideration.
What If Your Child Lives When Expected to Die?
No matter how much time one may have with a child diagnosed with terminal cancer, the stresses of life can be extreme. Natalie Avila was diagnosed with DIPG, a common yet deadly pediatric brain cancer just before her third birthday. She was given 3-6 months to live, yet she is still with us at 3 years! The joy of this life is overshadowed by the reality of DIPG. Less than one percent survive past 5 years, and when the tumor activates once more, it's growth is swift and merciless. It is a constant shadow of fear for the family. And then, imagine your integrity being questioned, the validity of your child's condition when to an uninformed onlooker, the disease is not noticeable. Imagine having your reputation dragged through the mud amid extreme financial difficulty and the rejection of community. Natalie's father tells it like it is; look for "Natalie's Road Trip" fundraiser on our Facebook page in coming days to support quality time for this struggling family, through Jack's Angels Foundation.
Kimberly Beauchamp: The Hopes and Perils of Making DIPG History
We get a first-hand look inside the controversial treatment program in Monterrey, Mexico, to which many DIPG families flock with the kind of determination that only an utter lack of solutions and hope can inspire. Kimberly Beauchamp, through an introduction close to the heart with her niece Kiera, discovered this oasis of fellowship and hope in 2015. To this day, the founder of "Making DIPG History", a Facebook page chronicling cases of families in the DIPG community who followed this path while supplying an online community of fellowship, remains faithful to the quest for a cure and a world in which one can find hope.
Jodi Jacobs and the "Support DIPG Awareness" Petition
What is it like when there is literally nothing they can do, when your child is ok one day, but after the next might never walk again? Jodi Jacobs tells it like it is for DIPG families, discussing what happened to her 7 year old daughter, Cheyanne. DIPG, often labeled a very rare brain cancer, is revealed to be the 2nd most common pediatric brain tumor, and responsible for the majority of brain cancer deaths in children each year. Follow her fresh journey into activism for all kids with cancer and their families--that our children, our future, might hold higher value in the medical research system today, and more importantly, tomorrow. Every child's life deserves hope.
Project Haystack Part II
Molly Lindquist, CEO of Children's Cancer Therapy Development Institute in Beaverton OR, joins us to share her personal story of cancer survival and the importance of the parent-funded research at cc-TDI. We continue exploring the research Project Haystack for rhabdomyosarcoma, and hear from two more foundations helping to fund this project, first Vanessa Lendvay with Team Naomi, from Saskatoon Saskatchewan, Canada. Team Naomi began in the family living room between Vanessa, a pharmacist, and her husband, a teacher. Their daughter Naomi was stronger than her cancer, and to be told that the cancer was stronger than the science currently fighting it was unacceptable to them. The option to do nothing wasn't either, and so "Team Naomi Get Well Now" was formed, donating over $188,000 in its first 2 years to rhabdomyosarcoma research. Finally, Larry Perfetti joins us from Highland Park NJ and shares the legacy of his daughter Kirsten, Kier’s Kids, which provides support for children, young adults and their families directly while helping to find cures for rhabdomyosarcoma and other pediatric cancers.
With-Purpose Foundation: Kid-Power in Awareness and Fundraising
The charitable organization With Purpose, in Minneapolis MN, was founded by Erin Benson in loving memory and trust of her son Sam Lee who perished to brain cancer at a very young age, and who exhibited exceptional clarity and faith in our ability to create and enjoy our own happiness, together. The organization is dedicated to inspiring today’s youth and engaging their creativity through education about the realities of childhood cancer and the challenges to adequate treatment, support, and funding for pediatric research. Truly, With Purpose is, in its public engagement, is part of the solution to the general lack of research funding for pediatrics in our medical research system today, especially for cancer, the leading disease-related cause of childhood deaths in the United States. Featured are Catherine Thibault, and twins Nicole and Rachel Olson, who have exhibited outstanding leadership in event organizing and fundraising totally over $40,000 to date in just the last 3 years. Launched in 2015, the direction of With Purpose was shaped by the young people who spontaneously took up the cause of creating a world where kids with cancer have access to safe and effective treatments. Catherine, Nicole and Rachel have led the way as new young people are featured each month for taking action in their communities to help affect change for their peers with cancer. For more information about With Purpose, please visit www.with-purpose.org.
Part I: Project Haystack with cc-TDI, Dr. Charles Keller and Fight Like Mason Foundation
Dr. Charles Keller, Scientific Director of the Children's Cancer Therapy Development Institute, describes for us in opening the show, the ongoing work at the Institute funded by parent-led foundations in its quest to make all forms of childhood cancer survivable, specifically Project Haystack, an international collaboration in rhabdomyosarcoma research. In partnership with 10 family communities around the world, the Children's Cancer Therapy Development Institute is embarking on a drug discovery project for rhabdomyosarcoma through an academic-pharma partnership with a major Swiss pharmaceutical company; 640,000-compounds have been screened across a range of cells-of-origin and mutational profiles for primary tumor cell cultures taken from murine sarcomas. Four of the most potent hits share near-identical chemical structures. All compounds have cell growth inhibition activity against alveolar RMS (ARMS) and embryonal RMS (ERMS), only mixed activity against UPS, but no activity against normal fibroblasts. One of these compound hits is an FDA-approved cardiovascular medicine with a favorable long-term side effect profile, and completely unstudied with respect to rhabdomyosarcoma. Ian Marci joins us from the Fight Like Mason Foundation, and Laura Roberts with the Elaine Roberts Foundation to share their experience, involvement in the research, and inspiration to keep working for a cure.
The Heart of Luminous, with Luna Zin
Luna Zin joins us from her Utah home to discuss her first book, "The Heart of Luminous", inspired by her research in the childhood cancer community, and by a special little boy in particular who lost his life to brain cancer. Luna takes us on a personal journey of discovery and inspiration as a writer and advocate for children with cancer which continues today, as "Luminous" is but the first story in a volume of many more to come. The book takes the themes of life and death, good vs. evil, magic and creativity to an evolved vision where life's story never ends, but changes. The reader is drawn along by one's own curiosity to learn more, explore more deeply what all of these concepts mean as life continues to unfold.
Ellie Waters: Beating Alveolar Rhabdomyosarcoma, Surviving Teen Life
Ellie Waters visits with us from the UK to give us an update on her progress, cancer-free, and also gives a clear picture of the realities of teen life, having survived cancer. Team Ellie's blog is prolific and her helpful influence on other children and teens is significant. Ellie speaks out about bullying, yes even as a cancer patient, and shares her experience, strength, and smarts with others.
Chase Jones and the Biden Cancer Initiative
Chase Jones is a survivor of childhood brain cancer, founder of Vs. Cancer Foundation, and is organizing community leadership around the country for the September 21 Biden Cancer Summit. He discusses his own experience with brain cancer at 18 and its personal ramifications, including survivor guilt and how he overcame that to find greater purpose in his life. The greater need for research funding consideration for pediatric and deadly disease is an issue for a conversation which the Biden Cancer Initiative welcomes. It's easy to join; visit bidencancer.org/events to register today!
Tamlin Hall (AUS) Beating BPDCN, and her Blog at BraveryBox
Tamlin Hall and her mum Kerrilee visit with us to share Tamlin's story of surviving BPDCN, and the new network of hope and support that has grown from their experience with this rare but deadly disease. Tamlin's writing, at 14, shows subtlety and power beyond her years, but more importantly shares the realities of her battle with cancer and the hope and strength of her survival. You can find it at bit.ly/cctr-tamlin, at BraveryBox.com. Mum Kerrilee began the parents international network for BPDCN families on Facebook.
Kortney Rose Foundation Pioneers Fundraising for Pediatric Brain Cancer
Kristen Gillette, Executive Director of the Kortney Rose Foundation in Oceanport, NJ, joins us to discuss the abrupt loss of her daughter Kortney in 2006 to a deadly brain tumor and the change of the landscape of childhood cancer research since then. Joining us in Segment II is Eric Montgomery, currently hiking the Pacific Crest Trail to help raise awareness and raise funds for the first multi-institutional research project for DIPG and HGG, High Grade Gliomas, employing the most advanced genomic sequencing techniques in precision medicine. Kortney Rose Foundation's support for CBTTC, Children's Brain Tumor Tissue Consortium, with its home at Children's Hospital Philadelphia,has been crucial to the eventual development of this collaborative project. Eric Montgomery's project is called Hike4Pennies, at web address fourpennies.org where this project is explained in detail. Kortney Rose Foundation is preparing for it's 13th annual "Kortney's Challenge" 2-mi run/walk event benefiting pediatric brain cancer research, on August 5 2018; visit www.thekortneyrosefoundation.org for more information about this event and the evolving research project for DIPG.
Princess Keira's Dream: One Girl's Battle, A Worldwide War
Emma Wrenn joins us from the UK to discuss her new book about the life of her brave daughter Keira, who was one of a handful of children who pioneered the CED modality of treatment for DIPG in the care of Dr. Steven Gill at University of Bristol. Diffuse intrinsic pontine glioma is a death sentence for which Dr. Steven Gill developed this modality to access the tumor for treatment in an unprecedented way. Sarah Coyne, the book's editor and an acclaimed author in her own right, shares the process of this book, its powerful message, and an appreciation for Keira's role in childhood cancer awareness today: one girl's battle, a worldwide war.
Oncoceutics: Real-Time Solutions for Cancer Treatment
Joshua Allen, Senior Vice President of Research and Development at Oncoceutics joins us to explain a novel group of compounds called imipridones that he helped to create which target specific mutations in an wide array of cancer types. ONC201, the first that he personally discovered, is now being used in clinical trials for previously untreatable varieties of pediatric brain cancer. This new development in precision medicine is bringing hope to the worst of the worst, DIPG, diffuse intrinsic pontine glioma, and other deadly pediatric and adult CNS tumors. A modestly sized company, Oncoceutics maintains its commitment to scientific discovery and saving lives as its primary purpose.
A Legacy of Love and Hope: Julianna Sayler Foundation
Stacie Sayler of Walla Walla Washington tells the story of a happy family of 5 on a small farm, Eric Sayler the father is a pastor, mom home-schools her children. One day everything changed when Stacie noticed her daughter's eye was not tracking properly. Julianna was diagnosed shortly thereafter with a deadly brain cancer of which the family had never heard, and they were told to just go home and make memories, as she probably would not live another year. Determined to find answers for herself and for those children yet to be diagnosed, Julianna and her parents embarked on a journey around the world in search of a potential or future cure. Julianna fought long and hard but the virulently aggressive tumor took her life just 9 months after her diagnosis, experimental treatments at the Harley Street Clinic in London, England, and in Monterrey Mexico. The Julianna Sayler Foundation helps families pursue their dreams of a cure, and shares Julianna's unending love and faith in the goodness of life.
"Lighten Our Darkness": Two Moms Advocate for Others from Life's Most Tragic Loss
Kirsten Finley and Jamie Franzini, both coincidentally from the same Congressional District in Florida--that of Rep. DeSantis (R-FL-6)--discuss their recent and tragic losses and resulting action in advocacy for children with cancer to inspire greater awareness for the perilous situation so many families find themselves in every day in the United States. Brain cancer is the leading cause of death in children with cancer; those diagnosed with DIPG receive an immediate death sentence, seemingly out of nowhere. Kirsten and Jamie frankly share some of the realities they have faced and the action they are now taking to bring change for other families in the future. These two strong women carry the light of their sons' love and hope, Kayne and Anthony respectively, for a better world for other children into the future. .
Hike 4 Pennies: Uniting the Childhood Cancer Community
Ginny McLean, Communications and Outreach Director for Swifty Foundation joins us to discuss the Hike 4 Pennies program with hiker Erick Montgomery who has taken on the challenge of the Pacific Crest Trail, from Tijuana, Mexico to the Canadian border to raise funds for urgently needed pediatric brain cancer research. The program joins social media with the real-time hiking experience in the wild, every step of the trail accounted for with 4 pennies. The four pennies concept is well-known to most in the childhood cancer community, with its reference to the 4% of our national budget for cancer research that is directly purposed for pediatric cancer research annually. Coincidentally, as Brain Tumor Awareness Month approaches, we are reminded that brain cancer is the leading cause of death in children with cancer, and DIPG, the undisputed juggernaut of pediatric brain cancer, diffuse intrinsic pontine glioma, is responsible for the majority of brain tumor deaths annually in the United States. Swifty Foundation, the Pediatric Brain Tumor Foundation, Dragonmaster Foundation, and the Courtney Rose Foundation are teaming up to raise funds with 4 pennies for the Project Open DIPG, a ground-breaking collaborative project for research in pediatric neuro-oncology, and partnership between PNOC (Pacific Pediatric Neuro-Oncology Consortium) and CBTTC(Children’s Brain Tumor Tissue Consortium) research groups. There has been no progress in standard treatment or prognosis for the terminal disease in over 50 years. Project Open DIPG embodies a “team science” strategy – pairing CBTTC’s approach to tissue sample collection, genomic sequencing and data analysis on the CAVATICA platform with PNOC’s clinical trial efforts. By sharing data openly, Project Open DIPG will help the research community more quickly identify and develop personalized treatment strategies for DIPG and other types of pediatric brain tumors. Swifty Foundation's mission is simple, as it's founder, Michael Gustafson stated before succumbing to medullablastoma, a deadly pediatric brain cancer: to raise awareness and funds for pediatric cancer research so that, “No other child will have to go through what I did.”
STRAIGHT TALK with the Fachons about Neil's Incredible DIPG Journey
Both parents Dean and Wendy Fachon join us to share the story of their son Neil Fachon's diagnosis of DIPG, one of the deadliest pediatric brain cancers. Their journey included the hope of an experimental treatment at the Burzynski Clinic near Houston, TX, and what it was like to endure an FDA interruption of treatment. Neil's bright and shining personality has been a huge loss to both the family and their community, as he had already been attending college in Boston with a future ahead--cut short by a merciless disease. The family is actively working on Right to Try legislation in Rhode Island, their home state, and also with Senator Reed concerning the federal Right to Try legislation; a story to be continued.
What We Do when there are NO OPTIONS, with Melany Knott
What would you do if your doctors provided no solutions for your child? When nowhere in your country was hope for survival inferred by treatment? Melany Knott tells us about her daughter Kaisey who is currently 17 months out of a diagnosis of DIPG, for which the median survival time is 9 months. Kaisey, although diagnosed with a terminal brain cancer, has hope for longer survival today because of a controversial treatment she is receiving in Monterrey, Mexico. Part I.
Zoe's Butterfly Foundation, Part I
Melissa Castango joins us to share the story of her daughter Zoe, diagnosis with brain cancer and the beginnings of her journey with Zoe's Butterfly Foundation in Milford, CT. The realities of a terminal diagnosis for the family including changes in friendships, family structure, and the desire to honor and preserve the memory of her daughter are an ongoing journey of discovery and determination to raise awareness for a more hopeful future for others. DIPG is not so very rare. Part I.
Ken Bettencourt and 10,000 mi for Heroes and Angels
Heroes and Angels in Little Rock, AR is the real deal: a small, grassroots organization doing everything humanly and angelically possible to support children with cancer by helping local families, raising awareness to the urgent need for greater pediatric research funding, and with Ken's amazing bike rides for kids. He's ridden over 270,000 miles so far, and is gearing up for the big 10,000 miler in May. Visit www.heroesandangelscorp.org, and @heroesandangelscorp page on Facebook, for more information, and to follow Ken!
Fly like a Superhero with Smile High Club
Jim Churchman joins us to share the story of the Smile High Club, a non-profit organization dedicated to putting smiles on faces and hope in the hearts of children facing illness or any physical challenge. A stuntman for many years, Jim Churchman is a 2nd Unit Director and Stunt Coordinator with over 100 film and television credits, and his "give back" to the community is to create this fantastic scenario where the kids actually get to fly like a superhero on wires with GoPro video capturing the experience! His stunt colleagues join in the fun to support the kids experience and to make it all happen. The Smile High Club's 3rd Event is this Saturday, March 17, in Agoura Hills California. Inspired by his late mother and inspirational colleague who lost his life to stomach cancer at 27, the dedication Jim Churchman has to following his heart is what makes him Childhood Cancer Talk Radio's Hero of the Week!
Theodore Lives with Juvenile Batten CLN3 Disease
Nurse and family confidante Nick Maroulis, and brother of Theodore Vasilis Ntoumas join us to discuss Batten disease and the effects of fatal, rare, pediatric disease on the family and in a country where support is so difficult to instate. Nick comes to us from Greece, while we speak with Vasilis who now lives and works in London. Theodore is a living miracle, still active in his life and a source of love and inspiration to those who know him. Research into cures for this deadly, genetically caused disease is still in its infancy, and the family--in particular Theodore's mother Christina, strives to create greater awareness and a stronger network of concern around the world with their website, www.theodoresmiracle.com. This conversation is a wonderful update to our original show with Theodore's mother Christina, with Nick, in April of 2017. Theodore's brother Vasilis, who talks to Theodore every day via Skype, adds a beautiful dimension of love, hope, and togetherness that only a sibling can bring.
NORD Advocates for Rare Diseases
Paul Melmeyer, Director of Federal Policy for NORD, the National Organization for Rare Disorders,joins us to discuss NORD's advocacy activities at the local, State, and federal level. The pioneering organization in support of all patients with rare diseases first introduced the Orphan Disease Act in 1983, the year of its founding, and made those with rare disease a force in the world, and a voice in the medical community. Rare Disease Day is February 28; to learn more about NORD, visit www.rarediseases.org, and www.rarediseaseday.us.
Global Childhood Cancer Advocate Gerry Tye in Sydney, Australia
Gerry Tye joins us from Sydney Australia to discuss the changes in the childhood cancer community over the past six years. A father of three boys, Gerry's middle child Talin (age 5) was diagnosed with brain cancer in 2012, passing away shortly thereafter. Beginning in relative obscurity, Gerry's advocacy for other families and their children with cancer evolved into leadership in several advocacy groups with global reach. Gerry discusses the reality of his own experience as well as the triumphs and challenges in continued advocacy work.
Paul 4 the People: A Personal Journey of Advocacy through Involvement
A long-time advocate for children with cancer, Paul Miller of Littleton, CO shares with us his story of advocacy through fundraising events, routinely donating blood, supporting groups, connecting people, and how these activities have finally evolved into a bid for his State Legislature. Catalytic to this quantum leap was interacting with lawmakers on Capitol Hill, their staff, and the challenge of making a meaningful impression to raise sufficient awareness for further action.
FACTOR 2018: MIB Agents Osteosarcoma Mission Full Speed Ahead
Ann Graham, CEO of MIB Agents--Make-It-Better-Agents--and osteosarcoma survivor, joins us to discuss the great strides in improving outcomes for osteosarcoma patients which her organization accomplishes as they move forward. The FACTOR Conference began last year in 2017 and was enormously successful in bringing top oncologists, clinicians, patient families and advocates together to improve research funding strategies, exploring new directions in research, and expanding the scope of their mission in caring for osteosarcoma patients. On the eve of the 2018 FACTOR Conference, this deadly disease continues to affect approximately 800 children per year; it is ruthless in its action and tragic in effect on the afflicted and their families. Key to the discussion is the urgent need for greater awareness of the inadequacy of the medical research industry to adequately address the needs of the pediatric patient population with cancer.
Shane and Shawnee Doherty: The Story behind Hope through Hollis
Shane and Shawnee Doherty discuss frankly their experience with their son Hollis who was diagnosed with DIPG in March of 2016. DIPG, diffuse intrinsic pontine glioma, is for all practical consideration a death sentence. The Doherty family showed an extraordinary solidarity out of the gate to endure the experience in the hope of making the most possible wonderful days for their son, and choosing treatment plans accordingly. All treatments being experimental, see how this family navigated murky and uncertain waters to provide an exceptional quality of life for their son while he was here. Their dedication to hope continues in their support of cutting edge research into DIPG genomics with TGen and PNOC.
Angie and Steven Giallourakis and the Steven G. AYA Cancer Research Fund
Two-time cancer survivor Steven Giallourakis joins us with his mother Angie to share their experience which inspired the Steven G. AYA Cancer Research Fund in Avon Lake, Ohio. Angie Giallourakis is President of the organization which has programs in wellness, education, research and advocacy for young people with cancer. "AYA" is an anacronym for "Adolescents-Young Adults", a patient population faced with unique challenges including inadequate research funding, poor prognosis rates, and lingering medical issues for survivors. Angie's work has developed strongly into an exploration of healing and holistic living and wellness practices for patients and their families, while Steven and his advocacy for young people with cancer remains the inspiration and driving force of their organization. Steven lives with the same challenges facing many other survivors; his experience speaks to the importance of the STAR Act and other similar pieces of legislation needing greater public awareness and support in US Congress. Candidly, Steven shares with us some of his own personal experiences with loss which inspire him on a daily basis to fight for other young people with cancer.
Portrait of a Mom: Quality of Life and Neuroblastoma, with Sarah Brewer
Sarah Brewer knows the fear; through years of experience with her son Ben, diagnosed with Neuroblastoma at 2 years of age, her daughter Madeline just born, hers is a story of the most pervasive power of all: love. Her family changed forever, but love and caring remain intact and reign supreme. Hearing Sarah's story of commitment and faith in the face of perilous uncertainty, for so long, is a testament to the preciousness of her son Ben in his brave fight, and to the importance of embracing the best in each moment--and insisting on it. Sarahs blog documenting Ben's awesome survival is at www.strongerthanilook.com, a must-read for parents of children with cancer.
H.Res.69: Crucial Awareness Supports Greater Research from the Tragic Example of DIPG
Dr. Michelle Monje Deissiroth of Stanford University and Dr. Adam Green of University of Colorado, Denver, join us to discuss the breadth of their research as pediatric neuro-oncologists, specifically regarding DIPG, diffuse intrinsic pontine glioma. They discuss how they were inspired to study this particular disease as a focal point for much of their research, and the general state of the research landscape with regard to the challenges facing treatment and the hope of new discoveries which give important clues to causes and biological understanding. Dr. Monje and Dr. Green were conferring experts of Congressman Steve Knight's (CA-25) H.Res.69, the DIPG Awareness Resolution, which designates an Awareness Day for DIPG, and confronts the inadequacies of a medical research culture which systematically neglects those most urgently needing solutions, children with cancer. Cecilio Torres, whos daughter tragically died of brain cancer and began the Gabriella's Smile Foundation(San Antonio, TX) in her honor, gives us the unique perspective as a parent. He is joined by Paul Miller (Littleton, CO), concerned citizen turned tireless advocate for children with cancer, who shares his perspective as an onlooker to a rapidly growing community of children with a so-called rare disease and their families in the last 5 years.
Presenting: ENDURE, with Jay Korff
Emmy award-winning journalist Jay Korff of WJLA Washington DC joins us to talk about his new documentary film just released, Endure, featuring "Tattoo Tom" Mitchell and his crew taking on the challenge of the Tahoe 200 ultra-distance trail race in support of childhood cancer awareness. The runners' odyssey is punctuated by the personal stories of several childhood cancer victims and their families, exposing the reality which so many face on a daily basis. Tom Mitchell and his crew's commitment to these children is personal. Tom runs for specific children each mile; he lost his own daughter to cancer, and crew members each run to overcome the seemingly impossible grief from which there is no escape, ending in triumph and catharsis for all participants. Jay describes his own personal journey in creating the film, his relationships with the different families, and how he became committed to helping the cause. He shares with us his hope that the film's impact on the general public will be proactive in its effect, ultimately making a difference in policy.
Kids First 2.0 with Ellyn Miller
Ellyn Miller joins us to discuss the Gabriella Miller Kids First Research Act, originally signed into law by President Obama in 2014. The original bill ensured that a special fund was created at National Institutes of Health for research into pediatric disease, which historically receives inadequate funding for research. We're fortunate to hear about her daughter Gabriella, whos fight with brain cancer inspired the Smashing Walnuts Foundation as well as the naming of this very important bill. Kids First 2.0, or H.R.2008, ensures the continuation of this project which funds urgently needed research into pediatric cancer and other genetic-related diseases considered rare in our medical research system. Her son Jake, Gabriella's brother, endures the pain of loss to which siblings are subject in their own unique way, as November is Bereaved Sibling Awareness Month.
A Pioneering Journey, with Emma Wrenn
Emma Wrenn joins us to share her experience with her daughter Keira, who just passed away this last August as a result of her battle with DIPG, diffuse intrinsic pontine glioma. Keira's case was public, and many of us around the world followed her story. Emma shares candidly what life is like now, what remain to be the greatest challenges to the DIPG experience, and the hope that her daughter's life has given to research and progress for DIPG survival one day. Kenny from Michigan called in, having just lost his daughter to DIPG last May. Advocacy report focused on H.R.2008, Kids First 2.0, and H.Res.69, the National DIPG Awareness Resolution.
Real Solutions for Research Funding: NC3 Leads in Pennsylvania
Christopher Winters, President of NC3, the National Childhood Cancer Coalition, shares with us his work at the level of State Legislature culminating 10/25 in the passage of HB46 in the Pennsylvania Legislature. The bill creates the option for individuals to donate from their state income tax refund to pediatric cancer research. In a less than ideal political climate, change is slow going for raising awareness to the urgent need for greater funding for pediatric cancer at the federal level. Chris Winters isn't waiting around for a national conversation; NC3 is finding solutions beginning at the state level, developing a formula of working which will hopefully be duplicable, to some degree, in other states. NC3 Treasurer Jennifer Swatzer joins us first to discuss the victory and also the moving and powerful story of her son Collin, survivor of medullablastoma.
Outside the Box: Solutions for Kids with Target Pediatric AML
Julie Gillot and Dr. Soheil Meshinchi, an attending physician at Seattle Children’s Hospital treating children with high-risk leukemias, join us to discuss the innovative and exciting Target Pediatric AML program which promises genomic sequencing for targeted, effective treatment. Dr. Meshinchi oversees the world’s largest pediatric AML tissue repository, located at Seattle’s Fred Hutchinson Cancer Research Center. He is also a full faculty member at Fred Hutch, a professor at University of Washington, and he is recognized as a leading expert in the genetics of pediatric AML. Dr. Meshinchi’s research focuses on identification of new biomarkers and targets in pediatric AML to speed more tailored, targeted therapies and creative treatment options to young patients. Julie Guillot lost her son Zach to pediatric AML and it's current torturous treatment process. It's her mission to change this by assuring that all children have access to tissue repository and genomic testing for more humane, effective treatment and to provide hope for all deadly pediatric disease with this new model for research and funding espoused by the Target Pediatric AML Program.
Tamlin Hall's Journey with BPDCN, Queensland, AUS
Kerrilee Hall and her 13 year old daughter Tamlin visit with us today from Queensland, Australia. Tamlin is at the 100 day mark post bone-marrow transplant or BMT for BPDCN treatment, or Blastic Plasmacytoid Dendritic Cell Neoplasm, a disease difficult to diagnose as it exhibits traits of leukemia and lymphoma, and exceedlingly rare as a childhood cancer. Only 2 other children in the world are known to be actively combating the disease, the other being another 13 year old girl Caitlin Lee in Southern California. The girls meet on the air during the 4th segment of our show, and Caitlin and her mother Kelly have joined us on two prior occasions.
"My Dog Named Hope" Comforts Children and Supports Research
The new children's book "My Dog Named Hope" is about a special girl, her amazing dog, and one family's journey through childhood cancer. The story was based on a compilation of the experiences of many childhood cancer families by the author, Joe Dean. The book was illustrated by Lauren Curwick. Joe was a business executive as well as an executive US Senate staffer and founded the Stars and Stripes Honor Flights for Veterans of War. Joe joins us to discuss why he is so passionate about children with cancer and why he decided to write this book, the proceeds from which benefit pediatric cancer research and support.
'Champion of Change in Precision Medicine' Amanda Haddock, President of DragonMaster Foundation
Amanda Haddock spent 11 years of her working career in the non-profit sector and 12 years working in the technology industry, a self-proclamed "serial volunteer" whose son, David, succumbed to GBM in 2012 at the age of 18. The doctors and researchers they encountered on that journey led her to become a passionate advocate for brain cancer research. David Amanda was named a White House Champion of Change for Precision Medicine because of her work with Dragon Master Foundation; she is the first foundation representative ever asked to be part of the Children’s Brain Tumor Tissue Consortium’s Scientific Committee. She also participated in the White House Cancer Moonshot Summit and has been invited to participate in advocacy/research efforts by The New England Journal of Medicine, Harvard’s Broad Institute, and Consumer Reports. Amanda talks to us frankly about her experience, the formation of CBBTC/Cavatica, and how it empowers patient's data, an exciting new clinical trial opportunity soon to open up for high-grade gliomas and DIPG, the deadliest brain cancers with no truly effective solutions to date. Amanda's humility and dedication in her work is evident in the success of DragonMaster Foundation in its fostering effective collaborative organization in the the medical research community; she is Childhood Cancer Talk Radio's "Hero of the Week."
A Jog Around the Block for Brian Jones Becomes a National Sensation
The Run for the White House is a grassroots movement of runners and workout enthusiasts all rallying with their personal brand of activism to support awareness for childhood cancer, using the social media platform of Facebook to share their activities and motivations. Brian Jones's mission with the Run for the White House quickly emerged to be making childhood cancer research a national priority. The rise of this movement which spans 2013 to present, was perfectly in the flow of the "Morethan4" movement and the growth of the annual CureFest event in September, and the nationwide effort to raise awareness for the gold ribbon for childhood cancer. In the previous podcast to this, we explain that Amazon, just this year, is the first company to "Go Gold" for childhood cancer, dedicating 1 million boxes decorated with gold ribbons for children with cancer. Just this year, the Run for the White House joined forces with MaxCure Foundation to increase its power to raise funds for childhood cancer research as well as being a powerful rallying point for thousands to raise awareness to the suffering that so many families must endure on a daily basis, and some forevermore as childhood cancer is the #1 killer of our kids in the United States after accidents and injuries. We learn the history of this movement which anyone, absolutely anyone can join, its purpose, and the vision behind it, and its continuing inspiration.
American Childhood Cancer Organization, CEO Ruth Hoffman
The gold ribbon and the childhood cancer awareness movement started with a few good moms (and dads) in the 1970s... Ruth Hoffman, CEO of the American Childhood Cancer Organization, walks us through the journey to today and Amazon's million gold ribbon boxes! "Still, there's a long way to go..." says Hoffman, long time advocate for children with cancer. ACCO is unparalleled with its information and service to families across the country, and in collaboration with other groups internationally to educate the newly diagnosed, to help them get the support and the knowledge they need to make the best choices for them and their child as they navigate the new, previously unknown world of pediatric oncology.
Annette and the Carson Leslie Foundation Host the Golden Toast
Annette Leslie is a mom who has been through the harrowing experience of losing her son to medulloblastoma in 2010. His extraordinary life and character inspired the Carson Leslie Foundation's inception that same year, in Dallas Texas, and launched her into a world of advocacy for children with cancer, pediatric cancer research, and working closely with legislators to promote the prioritization of pediatric research funding in a culture that is profit motivated and often neglectful of those most needy of a cure. Annette spoke at the 2010 Inaugural Summit for the Congressional Caucus for Childhood Cancer co-chaired by her Congressman, Michael McCaul, and in 2014 she began hosting the tradition of the Golden Toast to honor those key Congressional leaders responsible for supporting the continuing evolution of the childhood cancer awareness movement into laws that ensure that the leading disease-related cause of death in children in the United States will receive adequate research funding, and affected children will receive adequate care and support.
Go4TheGoal and the Historic Golden Steps for Pediatric Cancer
Beth Stefanacci and Carina Trenka join us to share their experience and agenda with Go4theGoal, founded in 2006 shortly after 13-year-old Richard Stefanacci was diagnosed with Ewing’s Sarcoma. During his treatment, his family quickly became aware of the lack of assistance available to families battling pediatric cancers. Go4theGoal's unwavering mission is to improve the lives of children battling cancer by providing financial support, developing and implementing unique hospital programs, funding innovative research, and granting personal wishes. Go4theGoal is one of the proponents and beneficiaries of the 2nd Annual Golden Steps for Pediatric Cancer led by Baby Shawn, turning the Niagara Falls gold in support of Childhood Cancer Awareness on September 1st.
The Triumph of Team Ellie
Ellie Waters was diagnosed with alveolar rhabdomyosarcoma at the age of 14 and endured the heavy-duty treatments that this frightening disease necessitates, and is now at 16 a vibrant, bigger than life personality devoted to helping other children and teens with cancer. She comes to us from Northamptonshire in the UK with her twin sister Olivia and mother Sam Waters, each contributing to this story of love,certainty of faith in the face of difficulty, powerful support and advocacy for others. "Stronger together" is a motto of Team Ellie, and you can find Ellie's helpful blogs and videos for teens on Facebook's TeamEllieBlog, and Youtube channel Team Ellie.
Nicole Vathy and "Baby" Shawn face DIPG with the Golden Niagara Falls of September
Nicole Vathy, single mom of seven, shares her journey with her youngest, Shawn, who has been diagnosed with diffuse intrinsic pontine glioma. Shawn is one of the few who survive past the year mark to two years with a stable tumor. Nicole candidly shares with us this very difficult road with humor, horse sense, and a mother's love. Go for the Goal and Punt organizations are local childhood cancer groups benefiting from the Golden Steps 4 Pediatric Cancer led by Baby Shawn at Niagara Falls, a precedent setting event "going gold" for children with cancer all over the world.
More Life and Love to Remaining Days
Suzanne Gwynn has served as a critical care nurse for more than 35 years, in both the United States and Canada. During the first decade of her career, she served medically fragile patients who suffered from a variety of life limiting diseases in acute care settings. These experiences solidified her dedication to the field and encouraged her desire to specialize. She shares with us today her vision for LadyBug House, a concept and plan for leadership in palliative and acute care for child and adolescent patients in the United States, beginning in Seattle, WA.
Swifty Foundation: Cure Pediatric Brain Cancer
Al Gustafson is on the Advisory Council of the Children’s Brain Tumor Tissue Consortium and serves on the Board of Swifty Foundation, among several others; in addition to his work in ministry, Al is the president of the Gustafson Family Foundation, a private foundation promoting the development and education of young children at risk. His son Michael was diagnosed with medullablastoma which unfortunately recurred after treatment and a declaration of having been cancer free; he knew he would not be here long, and succumbed to the disease in 2013. He shared with his family his excitement at the opportunity to donate his body to science after much introspection as to what his life meant after his prognosis was certain. His vision, to cure brain cancer, and the name Swifty defines the Foundation that has arisen and flourished as a result of his ultimate sacrifice. Not only is Swifty Foundation successful at raising funds for pediatric brain cancer research, they are designing a program which facilitates urgently needed tissue donation for research. This much-needed program shows promise of having greater implementation on a nationwide basis, and further facilitating the research so urgently needed to save lives.
BPDCN Update with Caitlin and Kelly Lee
Caitlin joins us with her mom Kelly to update her progress since treatement for BPDCN, Blastic Plasmacytoid Dendritic Cell Neoplasm, a rare and aggressive form of leukemia. Caitlin describes as best she can her experience with chemotherapy, radiation, bone marrow transplant, and the tough decisions a very young girl has had to make with her family. Caitlin's grace and sense of hope is inspiring; she is truly a force for hope, compassion, and purpose in the world today. She is currently selling t-shirts to help give back to the all-to-often-forgotten teenagers at the pediatric clinic at City of Hope where she was--with special cards and age-appropriate items for them. Caitlin is the 3rd child so diagnosed in the United States and the first known survivor. We look forward to Caitlin's next update!
With Love and Hope from Mexico
From Monterrey Mexico, childhood cancer advocate Christina Wascher joins the show with Kristoffer Nordstrom, father to 5-year-old Linnea who is currently undergoing treatment there for DIPG, with hopeful success 6 weeks into treatment. The Nordstrom family is from Sweden and they are prepared to remain at least six months in Mexico for Linnea's treatment. With Dr.s Siller, Garcia and Rodriguez, each specializing in a different modality, a more holistic approach to brain cancer treatment is showing great promise for further development, even for the dreaded DIPG. Christina Wascher advocates for children with cancer but focusing on DIPG right now, as the research represents the frontier of our medical knowledge and the need for solutions, dire. She assists families as well as advocating for the research itself for greater collaboration between scientists in the world.
Advocacy, Research, and TNCI with Beth Anne Baber
“Eight years ago, a 15 month-old little boy with platinum blond ringlets and bright blue eyes was diagnosed with high-risk neuroblastoma, a childhood cancer that results in around 255 deaths/year in the United States. Based on the size, location and maturity of his tumor, the toddler had less than 50% chance to live long enough to attend kindergarten… Unlike most parents of children newly diagnosed with cancer, these parents were armed with decades of knowledge and experience in working with very same drugs that their son would receive intravenously. They knew about genetic markers and how these markers could predict their son’s prognosis and response to these drugs. Even though the biopsy indicated the child’s cancer was extremely aggressive, a genetic marker suggested otherwise; today he is a 13 year-old with no evidence of disease…” The Nicholas Conor Institute was founded out of the parents sheer frustration of knowing that existing technology and academic discoveries are not being further developed to save the lives of other children with cancer. Beth Anne Baber, CEO, joins us to share her son's story and to discuss this incessant and gnawing motivation for many parent-advocates: Why are existing technology and academic discoveries not being further developed for our children, adolescents and young adults? The answers are clear, and with increased activism and awareness of the realities so many children and their families are expected to endure, the solutions are visibly on the horizon for the childhood cancer community.
America's Foremost Runner-Advocates for Children with Cancer
Live from Roy's 100 mi Run for Christopher in Santa Clarita, CA, Roy Wiegand joins us for news on his progress, the support of the local community for his efforts to raise funds for the Michael Hoefflin Foundation. We are joined by BethAnn Telford, veteran of the World Marathon Challenge, to support Roy and to hear about her accomplishments and challenges, with conversation between runners, with potential planning for events in the next year. Everett Smith of Redlands, CA then joins us to report on his Appalachian journey with Tony Stoddard, legendary childhood cancer advocate and endurance athlete. Everett has initiated several endurance events benefiting pediatric cancer awareness and research, with his Appalachian trek benefiting Sophia's Fund at sophiasfund.org. Last but not least, we finish our heroes' round table with Brian Jones, founder of the Run for the White House event, which this year began January first and continues through September 17, the date of CureFest. He talks about the recent merger with MaxCure Foundation for a dynamic new start, and we discuss navigating the current political climate for our common cause of raising awareness for the urgent need for pediatric cancer research.
CannaKids with Tracy Ryan
Sophie Ryan, daughter of Founder and CEO of CannaKids Tracy Ryan, inspired the birth of CannaKids. Sophie was diagnosed at 8 1/2 months old with an extremely rare brain tumor called an Optic Pathway Glioma; after using cannabis oil in combination with her chemo protocol, Sophie’s tumor shrunk by over 95%, a tumor which doctors said minimal shrinkage would be a best-case scenario. Doctors also said Sophie would have partial if not complete blindness with zero chance of saving her vision. After successfully keeping most of her vision intact, Sophie has become a medical miracle. Tracy and her team at CannaKids have recently entered into collaboration with the Technion Institute in Israel where they are legally studying the effects of cannabinoids on many cancer types. CannaKids is sharing all of their patient data that they have been meticulously collecting. In addition to the research in Israel, CannaKids is in the planning phase with a major hospital in California and is expected to start in-hospital clinical trials on pediatric patients this year.
Roy's Run for Christopher
Who knew so much was beginning in Santa Clarita, CA, a medium-sized community with a significant influence and leadership in caring for others. Childhood Cancer is not a comfortable subject for anyone, yet the unspoken rule of family is ingrained in certain members of this community, and it dominates here. I'm talking about the Michael Hoefflin Foundation; I'm referring to Roy Wiegand, ultra distance runner for children with cancer, and specifically here, Christopher Wilke. I'm talking about a movement for awareness that has local origins, regional popularity, and national recognition, always supporting H.Res.69., existing because of MHF in a very important way; the foundation supported the family involved in advocating for this legislation. Roy Wiegand plans a 131 mile run to benefit the foundation, for the love of Christopher Wilke, and his memory, that we may acquaint ourselves with this beautiful and inspiring young man and support the families in our Southern California community who are suffering the beginnings of this challenging journey of childhood cancer.
Hope for Osteosarcoma Research: #BecauseofDaniel
Professionally, Theresa Beech has had 20 years of experience as a space engineer designing satellite mission ground systems. She has worked as a ground systems engineer, technical lead, subject matter expert, and program manager for a wide variety of satellite ground systems around the world. She comes to Childhood Cancer Talk Radio with the story of her son, Daniel, who's battle with osteosarcoma ended his young, beautiful life, and left his mother determined to find solutions for this devastating disease. As with the deadliest of pediatric cancers, there have been no innovations for osteosarcoma nor progress in survival rates in over 30 years. What makes this story so important is not only the devotion of this mother, her talent and intelligence, but her genius in applying her knowledge of systems engineering to osteosarcoma genomics-- no small feat. The result of this personal research gives new leads to greater biological understanding of osteosarcoma as well as potential solutions for treatment. Write to osteoregistry@gmail.com if you are an osteosarcoma patient, parent, or researcher for more information.
Trailblazing to a Cure: DIPG-Treatment Advisory Council (G-TAC)
G-TAC founder and Executive Director of MaxCure Foundation Jonathan Agin, and G-TAC Medical Advisory Board Member Dr. Sabine Mueller, top neuro-oncology researcher and clinical expert at UCSF, discuss a new concierge-type service for families of the newly-diagnosed with DIPG (diffuse intrinsic pontine glioma) to more expediently direct them to more effective combinatory therapeutic treatments to which they might otherwise not have access, or knowledge thereof. The current prognosis for DIPG is 9 months survival-time with treatment and options are extremely limited in our current landscape of medical research and clinical trials. The work of the Council or G-TAC is to continuously identify the most promising treatment modalities in terms of efficacy, timing, and collaborative and regulatory access, to accelerate and fine-tune decision-making regarding the treatment path for a DIPG child.
K.I.D.S. Campaign with Christine Hanlon
CCTR interviews Christine Hanlon, Executive Director of the KIDS Campaign or Kindness In Doing Service, a 501(c)3 charitable organization devoted to sharing love and service with the childhood cancer community. Christine lives in the greater Tampa Bay area in Florida with her son Dylan, a survivor of Ewings sarcoma. Melanie Crowell, also an executive board member, joins the conversation about the beginnings of the Kids Campaign and its continuing mission.
Mom in the Midst
A warning to listeners, this contains emotionally sensitive material. CCTR interviews Judith Jaimes Contreras, mom to Ruben who is suffering through the progression of DIPG, a deadly pediatric brain tumor. She candidly shares the reality that hundreds of other families in the US are facing right now: the challenge of acceptance of the terminal nature of diffuse intrinsic pontine glioma, and the agony of witnessing Ruben's decline in utter helplessness.
Batten Juvenile Disease CLN3, a Genetic Nightmare
Christina Bouraimi (mother) and Nick Maroulis (nurse) join us on CCTalkRadio from Athens, Greece to tell the story of a brave young man Theodore who lives day by day with progressed symptoms of Batten Disease, CLN3. Christina describes the fairy-tale like joy of life prior to Batten, and the nightmare that ensued as her youngest of two boys went through the journey of diagnosis with Batten Juvenile CLN3 at the age of 6, which was unknown in Greece at the time in 2002. They received diagnostic news from U. Rochester in the United States, from Finland, and Germany to fully understand the scope of the illness. Theodore lives now a rich and well-scheduled life, enjoying music, political conversation, and following sports despite his loss of sight, cognitive and emotional challenges, and the threat of a deadly prognosis. Christina’s resolve to fight for her son in the difficult financial climate characteristic of life in Greece, and Nick’s compassion for the boy’s desire to live fully without question earns them the “Hero of the Week” title on Childhood Cancer Talk Radio; we salute Theodoros!
Roy Wiegand: Going the Extra Mile for Kids
On April 13 2017 Childhood Cancer Talk Radio interviewed Roy Wiegand of Burbank CA, suburb of Los Angeles, a local free-lance musician with an evolving career as ultra-distance runner and advocate for children with cancer. Roy began running later in life in his early forties, and has been "ultra-running" for about 7 years now, prompted initially by his association through his church with an Ethiopian gentleman who was visiting to raise awareness for the urgent need for clean water access in his native country. This inspired his church to host a 100-mile bike ride with Roy leading the effort to make this event a staple fundraiser for the charity Lifewater, and challenge to riders with at 12,000 foot gain in elevation for the event. Running for causes came naturally to Roy so that when he came across the Wilke family and their son Christopher, a boy-scout friend of Roy's son who had been diagnosed with a rare form of cancer with little hope for survival, he was inspired to run and raise funds for the local foundation supporting the Wilke family in their struggle. The Michael Hoefflin Foundation in Santa Clarita, CA, supports local families fighting childhood cancer in Southern California, and Roy has now run to raise funds for the foundation for the past four years. June 14th 2017 he will run his fourth ultra-distance run, this being 131 miles--his longest run yet--to support the Michael Hoefflin Foundation.
Childhood Cancer Talk Radio 03-30-2017
CCTR interviews Elizabeth Psar, an attorney with a focus in Juvenile law now on a mission against DIPG with the Julia Barbara Foundation. The discussion includes the realities of DIPG and her 2 1/2 year old daughter Julia, and the unavoidable effects of the experience of losing a child to a previously unknown killer. Julia's legacy is funding for DIPG research and a nationwide effort in support of an Awareness Day for DIPG, both at the State level with the "across the map project", and as a proponent of the National Resolution HRes69.
National Cancer Institute's Office of Advocacy Relations: A Conversation with Patrick Mahoney
Childhood Cancer Talk Radio interviews Patrick Mahoney from the Office of Advocacy Relations (OAR) at NCI. The March 16 discussion included a brief history of the National Cancer Institute, it's role as a scientific research institution as well as resource of support and direction for millions afflicted with cancer. "We want people to contact us...let us know their greatest concerns to better represent public interests in cancer research..," he sustained, sharing examples of public input affecting research and eventual solutions where there had previously been none. Host Janet Demeter ensured the conversation included the "dreaded" 4% issue--gladly addressed by Mahoney, bringing to the forefront the current challenges in medical research and also the recent efforts of advocates which have had a definite impact on the course of research and the importance of pediatric research at NCI, keeping the discussion to a collaborative and jovial spirit, and an optimistic outlook for pediatric research at NCI. The National Cancer Institute remains the greatest contributor to the field.
B.E.L.A.C. Foundation, Caleb Williams Legacy
Amperell Williams joins us on CCTR to talk candidly about her experience with her son, Caleb, who was diagnosed at the age of 5 with T-cell Lymphoblastomic Lymphoma. The Williams family was challenged with financial difficulty, the stress of toxic treatments and the devastating loss of her "miracle" baby. She describes how this unimaginably difficult experience transformed her life into one of giving and constant thoughts of other families traversing the same landscape of the childhood cancer experience, with the BELAC Foundation in Orlando, FL.
Vesselon: Addressing the Challenges of Brain Cancer with Non-Invasive Technology
Rhodemann Li and Clayton Larsen, co-founders of Vesselon describe the unique blending of two technologies into one platform effectively solving the problem of the blood-brain barrier in treating brain cancer. Using ultrasound and micro-bubbles, the future of pediatric brain cancer treatment could include a simple hand-held device enhancing the delivery of medication to the cancer, even the most difficult to treat diffuse intrinsic pontine glioma. Li an Larsen describe the pre-clinical investigations and the other tried-and-true clinical uses of both microbubbles and ultrasound in treating other areas of the body, for the heart, for instance. This innovation for the challenge of the blood-brain barrier will be developed for treating not only brain cancer but Alzheimers and other neurological diseases. The technology would allow delivery of medicine for large and small molecule treatments alike, including genomic therapy, enzyme, and immunotherapy as well as standard chemotherapy treatments. Advocacy news includes the introduction of the RACE for Children Act, the STAR Act, and the National DIPG Awareness Resolution. This technology newly developed to treat brain cancer is music to the ears of all affected by pediatric brain cancer, the leading cause of death in children with cancer. Li and Larsen are currently engaged in finding quick solutions to bringing this technology to the market for expedient accessibility, and to support the development of new and hopeful therapies for clinical trial.
"Talking Advocacy" with Danielle Leach
Today's guest, Danielle Leach, gives the childhood cancer community helpful information about advocacy, being a parent of a child with cancer, bereavement, experience with the non-profit health industry, and more practical advice for parents. There are many ways to advocate; you don't have to go to Washington and talk to Congress to be a strong advocate for children with cancer. We learn about Mason, the enduring inspiration for the continuation of her work. Danielle Leach is Sr. Adviser of Advocacy and Government Relations with St. Baldrick's Foundation, one of the United States most successful cancer charities with regard to funding childhood cancer research. Danielle is also the co-Chair for the Alliance for Childhood Cancer, one of our country's foremost advocacy organizations. Her son, Mason, who succumbed to brain cancer in 2007, is her enduring inspiration.
NC3: Legislative Advocacy at the State and Municipal Level
CCTR interiews Christopher Winters, President of the emerging National Children's Cancer Consortium, a project of collaboration between parents, advocates, and concerned citizens with policies developed after 18 months of current, grassroots research into the challenges children with cancer and their families face regularly. The goal of the Consortium is to help local organizations and families find proactive solutions at the local and state level. Christopher Winters has an extensive background in community organizing and serving as Chief of Staff for Representative Tom Caltagirone of the Pennyslvania House of Representatives. In it's beginnings, NC3 looks to serve the national public in finding the local and State connections to help meet their needs.
BethAnn Telford: Around the World in 7 Days for Brain Cancer
The great adventure that was the 2017 World Marathon Challenge is shared with our listeners in a big-hearted interview with BethAnn Telford, brain cancer survivor and super-athlete. Seven Marathons were run on seven different continents in just seven days time. BethAnn's mission to cure brain cancer with ABC2 (accelerate brain cancer cure) is taken to a whole new level of camaraderie, unity, and the importance of purpose that she experienced with her new friends in the event as they made their way around the world. BethAnn tells us about her upcoming projects in 2017 including the Race for Hope, the Boston Marathon, and Virtual "Relay for Jack" supporting the National DIPG Awareness Resolution, H.Res.69.
Khaleel's Leukemia Journey
Coming to you from Telford, UK, Kelly Khan tells the story of her 12 year-old son Khaleel, currently facing a relapse of leukemia. Khaleel had been a very healthy, thriving boy after having met with serious infantile diseases, pulling through them with flying colors. Kelly tells us how the experience of leukemia affects her family, how community has shown great heart, and shares information about donating stem cells, as there is currently a search for a donor for Khaleel.
MaxCure and the Run for the Whitehouse
Brian Jones, creator of the Run for the Whitehouse for Childhood Cancer on Facebook joins us to describe the beginnings of the program, what it has become, and discusses the adventure of teaming up with MaxCure Foundation with Executive Director Jonathan Agin. Both gentleman are prominent US advocates for children with cancer--Brian a keen grassroots organizer and runner, and Jonathan an attorney with a talent for supporting childhood cancer legislation in even the most adverse congressional climate. The linking of this widespread movement of donating miles to support children with cancer takes on a whole new dimension in philanthropy, making it possible for anyone to make a difference for kids with cancer and get fit at the same time!
DIPG Across the Map
Jenny Mosier, Executive Director of the Michael Mosier Defeat DIPG Foundation joins us to discuss a 50-State Project for DIPG, calling for volunteers in as many states as possible to work for a gubernatorial or state legislature proclamation for May 17 2017 DIPG Awareness Day. The 2017 National DIPG Awareness Resolution will be introduced by Congressman Steve Knight (R-CA-25) in the US House of Representatives on January 30, 2017, designating May 17 also for a cohesive effort of Jack's Angels Foundation with Michael Mosier Defeat DIPG Foundation's DIPG Across the Map Project for DIPG Awareness. The nationwide project has over 30 states participation so far; joining us also, from the perspective of a DIPG family currently battling the realities of the disease for their daughter Brooklyn, is Nicholas Smith of Ohio. Keren Beukema of California, who lost her son Vincent to DIPG last July in a swift and devastating blow, lends her perspective to the importance of the project. Lawrence Fagan, a retired technology and medical researcher who learned of DIPG's deadly existence through the experience of others, gives critical information regarding the importance of larger, collective awareness for the disease nationally. We may be witnessing the critical point between suffering and the proactive movement towards a solution and the momentum necessary which needs no further case to argue for change. DIPG stands for itself, and makes a precedent-setting testimonial for the deadliest childhood cancers for which research has been, historically, neglected due it's small numbers and silent constituency.
#RunfortheKids and the Quest of Christopher Winters
CCTR interviews Christopher Winters, Chief of Staff to PA House of Representatives Honorable Member Tom Caltagirone about his extensive experience in public service and work since 2013 in the Childhood Cancer Community, how he became one of the fiercest advocates for kids fighting cancer and their families in the nation. We discuss Running For The Kids, why he started running, his goals, this years marathon in Philadelphia 5/17,his running team, his collaborating groups and his hopes for "Running For The Kids", as he prepares to launch that effort as a 501(c)3 organization.
BethAnn Telford and the World Marathon Challenge
CCTR interviews BethAnn Telford, originally from Harrisburg, PA and now living in Fairfax, VA; she is a brain cancer survivor and ultra-distance runner for brain cancer research. BethAnn talks about the children who inspire her to run, and the urgently needed research for brain cancer funded by ABC2; Max Wallace, CEO, joins us also to help give a full picture of the selfless and heroic stature of this rather small but unstoppable dynamo and force for good. On January 23, 2017, BethAnn is scheduled to begin the World Marathon Challenge, running 7 marathons on 7 continents in 7 days of time!
Dr. Adam Green, HGG (high-grade glioma) Research at UC Denver
Pediatric brain tumors are the leading cause of death in children with cancer, of which DIPG and HGGs (high-grade gliomas) represent a significant need for effective and timely solutions. Researcher Dr. Adam Green gives a clear explanation of the high-grade gliomas and a look into the research that he's currently working on in his own laboratory at the University of Colorado Denver. Caring for patients also at Children's Hospital Colorado, Dr. Green talks about his calling to pediatric neuro-oncology and the various pathways to this area of expertise that welcome young and upcoming researchers. With the advent of many parent-initiated foundations for pediatric brain tumor research in the last decade, the funding possibility is making the future look brighter for solutions.
Children's Cause for Cancer Advocacy
CCTR interviews George Dahlman, CEO of the Children's Cause for Cancer Advocacy, the United State's Premier Childhood Cancer Advocacy organization. Mr. Dahlman is responsible for identifying and advancing issues that will improve the treatment and lives of childhood cancer patients and their families with Congress, the Administration, federal agencies and state governments. He is also responsible for ensuring that families have the opportunity to participate as advocates in the policy process. The focus for today's show is current legislation for Childhood Cancer, the uncertainty of a new Congress and Administration, and the predictable march forward with larger numbers and louder voices for our kids.
CureSearch CEO Laura Thrall
CCTR interviews Laura Thrall, CEO of CureSearch since 2012, with five years of refining purpose, innovation, and efficiency in the medical research industry to benefit pediatric cancer research funding. The primary goal and measure of the success of any new policy should be evident in patient care, access, and improved treatment options for children. The history of CureSearch is highlighted, and the intricacy of the industry is illuminated with more to tackle than simply increasing the 4% of the Federal funds for cancer research designated for pediatric research. Advocacy, the importance of the pharmaceutical industry, and pragmatic solutions to the long-standing difficulty to improving treatment options for children are highlighted.
Keira Wrenn, DIPG Survivor
CCTR interviews Emma Wrenn who's daughter Keira is a survivor of DIPG, diffuse intrinsic pontine glioma, a virtually unheard-of experience. Emma shares with us the realities of diagnosis and experimental treatment, and the inevitable challenges of living with the effects of brain cancer treatment, and the anxiety by which even a clear MRI scan is accompanied. Emma comes to us from Alford, Lincolnshire in the United Kingdom.
Make It Better Agent Ann Graham
CCTR interviews Ann Graham, founder and CEO of MIB Agents, an organization devoted to making the lives of children and young people with osteosarcoma better. A groundbreaking conference, FACTOR, is scheduled for 2/24-25 of 2017 including experts, clinicians, patients, and families of children who have perished or who are currently battling osteosarcoma, to create new solutions for the many problems common to children with cancer. Support the MIBagents mission at www.MIBagents.org.
Inside CureFest with Emily Belcher
CCTR interviews Emily Belcher, advocate, event planner, mother of a childhood cancer survivor, and CureFest volunteer, who tells us about the early days of CureFest, the events goals and influence, and the direction of the Childhood Cancer Awareness Movement. Emily discloses her daughter's frightening experience with PNET, a pediatric brain cancer, subsequent triumph, and family's commitment to improving life for those children yet to be diagnosed.
Zamora Moon: Living with DIPG
CCTR intereviews Marisa Martinez, mom to Zamora Moon, a little 12-year old girl battling DIPG, diffuse intrinsic pontine glioma, arguably one of the deadliest cancers which is almost exclusively pediatric. Her pioneering journey into the unknown includes treatments in Germany and the UK. Lisa Spedale, who's daughter Kira was the first child in the United States to undergo CED surgery and treatment for DIPG, joined us with compassion and perspective. Our prayers for steadfast determination for brave Zamora continue as we follow her story.
BPDCN: Caitlin's Story
CCTR interviews Caitlin Lee (12) and her mom, Kelly about Caitlin's recent diagnosis with BPDCN and course of treatment. Blastic plasmacytoid dentritic cell neoplasm is a rare, especially among children, acute leukemia subtype with no therapeutic protocol because it is so rare and newly categorized. Stories of hope and unparalleled strength are tempered with the pending realities of a bone marrow transplant...stem cells, and a baby donor's umbilical cord. Caitlin is a gifted student with scientific aspirations. We will be following her story with high hopes of a full and complete recovery.
Jaime's Journey--Cancer from the Voice of a Sibling
Author Sharon Wozny shares with us her first book for children facing the difficult emotional challenges of having a sibling with cancer and the effects of this on the family. Inspired by her volunteer work with the Children's Cancer Network in Chandler, AZ, Sharon describes the experiences she had as a teacher for 30 years and with the organization which helped her craft the book which is half story, half creative journal. Patti Luttrell, Executive Director of the Children's Cancer Network, joins us to explain how this and other works of the organization help local families.
#KidsCancerPain Campaign and the Cancer Knowledge Network
CCTR interviews Dr. Christine Chambers of the Centre for Pediatric Pain Research at IWK Health Center in Nova Scotia, and Dr. Jennifer Stinson, nurse at the Hospital for Sick Children in Toronto about #KidsCancerPain, a new social media campaign supported by the Canadian Cancer Knowledge Network designed to help children with cancer and their parents better assess and treat their children's pain symptoms. A new application for iphone, Pain Squad, is a game-like program that helps kids manage and assess their pain needs with immediate pdf communication to their doctor, available now for free download. The social media campaign involves tweets, blogs, links to important information, and also helps parents to connect.
Genentech: Leading the Industry with iPODD, iMATRIX and More with Raphael Rousseau, MD, PhD
CCTR interviews Raphael Rousseau MD, PhD,the global franchise head of the innovative pediatric drug development group at Genentech. Considered the founder of the biotech industry, Genentech, a member of the Roche Group, has headquarters in South San Francisco, California. Genentech has been delivering on the promise of biotechnology for over 40 years, and oversees Roche’s pediatric strategy and ensures optimized implementation of pediatric clinical development plans across the company’s oncology portfolio. Dr. Rousseau explains the innovative Pediatric Oncology Development Group and the iMatrix protocol, which pairs medicines with their known molecular targets, regardless of the cancer type. Matching approved and investigational medicines by their mechanism of action expands the number of eligible pediatric trial participants. iMATRIX also invites collaboration within the industry for trial patients and opens up previously untested avenues for currently existing as well as new investigational therapies. The hope is that this approach will ultimately generate more robust clinical data and efficiency, and help researchers may accelerate the development of promising medicines for children.
Carson Leslie Foundation and the Golden Toast 2016
Annette Leslie, founder and CEO of Carson Leslie Foundation, talks to us about her son Carson and his book, "Carry Me", his inspirational story of hope that inspires the work of one of the most dynamic collaborative foundations for pediatric cancer research and support for teens with cancer. CLF is located in Dallas Texas, and Annette describes the yearly North Texas Giving drive, this year on 9/22/2016, with contributions from all over the world. Annette and CSF is the host of the 2016 Golden Toast for Congressmen McCaul and VanHollen of the Congressional Caucus for Childhood Cancer.
Keene and Spurgeon on the Childhood Cancer Guides
CCTR interviews Nancy Keene, well-known writer and advocate for children with cancer, and co-author of the Childhood Cancer, A Parent's Guide to Solid Tumor Cancers. Her work has appeared in publications such as Reader’s Digest, Journal of the American Medical Association, Exceptional Parent, and Coping Magazine. Co-Author Anne Spurgeon founded, and worked as executive director for, the Badger Childhood Cancer Network in Madison WI. Both ladies are mothers of childhood cancer survivors and are dedicated to serving the Childhood Cancer Community in finding the services they need with the support they deserve.
September 1--Go4theGoal at the Golden Niagara Falls
CCTR interviews Beth Stefanacci and Carina Trenka of Go4theGoal, a dynamic support organization for children with cancer based in Cherry Hill, NJ, and one of the beneficiaries of the historic "Golden Steps for Pediatric Cancer Awareness Walk." The walk led by Baby Shawn who is a local young hero in Niagara Falls, NY, currently battling DIPG, commemorates the momentous occasion of the Niagara Falls "going gold" for childhood cancer awareness. Go4theGoal helps kids with cancer achieve their goals, supports cancer families, and also supports local institutions which care for children with cancer. In our final segment we were joined by "Driven Change", Childhood Cancer Awareness activist more than half-way through his 50 state journey.
Legislative Landscape for Childhood Cancer Drug Development: Jonathan Agin, JD
CCTR interviews Jonathan Agin JD, father of Alexis who perished to DIPG in 2011 and 4 other young children, and official counsel and co-founder of the Children's Cancer Therapy Development Institute. One of our country's foremost advocates for children with cancer, Jonathan describes the complexity of our medical research system and the challenges to funding pediatric cancer research, and the importance of advocacy. PREA, the Race for Children Act, and the Childhood Cancer STAR Act are among the pieces of legislation discussed, and their importance to progress with pediatric cancer research.
Niagra Falls NY leads the USA in its support of Childhood Cancer Awareness Month, with Michael Esposito
CCTR interviews Michael Esposito, father of five, teacher, and basketball coach, the man responsible for connecting people in his town of Niagra Falls, NY which will witness the most prominent and powerful display of support for children with cancer this year, 2016. Baby Shawn with DIPG and his meeting Stephen Curry, the prospect of the NFL going gold for a week in September, Go 4 the Goal, PUNT, and Neal Rourke's 2000 mi bike ride from Niagra Falls to Key West with TRF.org are all part of the discussion around the big event on September 1st in Niagra Falls. Updates on livestreaming for the September 1 event will be available at jacksangels.org.
Live from the cc-TDI Nanocourse 8/2016
Live from the Children's Cancer Therapy Development Institute, CCTR interviews 4 participants of the 2016 Pediatric Cancer Nanocourse, an introduction to the scientific research process and an opportunity to build a network of informed and empowered advocates who can drive the cure of rare cancers. cc-TDI has for its mission to bridge the gap between promising research and actual therapies for children with cancer.
Neal Rourke, Jesse Robinson: Advocacy and Action for Kids with Cancer
CCTR talks with Neal Rourke and Jesse Robinson about the Childhood cancer Awareness Movement and the Upcoming September, Childhood Cancer Awareness Month. Today's show features lighting, "Going Gold", the Maggie Project, and Tyler Robinson Foundations's Project CANCO, a bike ride planned to begin Sept. 1 from Niagra Falls, Canada to Key West, FL, 2200 miles. The ride will be gifting needy families with a child afflicted with cancer donations of $10,000 along the way, with a total of $100,000. Action is underlined as being just as important as Awareness for change.
Dr. Mark Souweidane: On a Mission to Cure DIPG 07-28-2016
CCTR interviews Dr. Mark Souweidane of the Weill Cornell Medical College and pioneering neuro-surgeon in the United States, known especially for the ground-breaking clinical trail with Catheter Enhanced Delivery (CED) of medicine to the DIPG tumor, currently with no survivors. The trial shows great promise of extending life for many trial participants.
Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation
Jenny Mosier, co-founder of Michael Mosier Defeat DIPG Foundation, joins CCTalkRadio and discusses her son Michael and his journey with DIPG, and how his fight inspired the #defeatDIPG Foundation which is now in 3 regions of the United States within a year. Dedicated to finding a cure for the deadliest pediatric cancer, Jenny's encouraging manner and all-inclusive style of camaraderie with her DIPG parent-peers has revitalized the DIPG community with hope in the real effects of parent-funded research.
Today's show features Ronnie Duvall, "Driven Change" on facebook, one who truly walks the talk of his values. Ronnie gave up his job and home to drive all 50 states in his quest for greater knowledge in how to create an organization which will truly address the needs of children with cancer and their families. "Life is full of opportunities to make a difference; pick yours and never look back while being what you're meant to be." Ronnie's location will be a surprise as we connect this afternoon; for his most recent experiences, visit his page Driven_2Make_change on facebook. A true activist, he lives and breathes telling the truth about a medical research system which is directed by profit and not so much for saving lives, and he doesn't give up the fight to raise awareness for and change the meager 4% afforded to childhood cancer research by the National Cancer Institute. CCTR's Hero of the Week!
Creating Hope: Nancy Goodman
CCTR interviews Nancy Goodman, the first to speak publicly about the new childhood cancer legislation which is a true winner for children and our creative industry for the development of pharmaceuticals for cancer. We talk about the intrinsic goodness of people and a positive approach to finding ways of bringing the best that our industries, researchers and caregivers can possibly bring to the table of childhood cancer.
Melinda Marchiano: Author, Dancer, Advocate for Children with Cancer
CCTR welcomes Melinda Marchiano, a recent graduate of Pepperdine University and cancer survivor, and ambassador for ccThrive.org. Melinda is the host of The Truth 365 recent childhood cancer documentary release and has toured and continues to tour extensively, speaking at hospitals and events and spending precious time with children afflicted with cancer. Melinda is the author of "Grace: A Child's Intimate Journey through Cancer and Recovery", a professional dancer and Principal Dancer of Cantinas Dance Project in Los Angeles, CA. Melinda was diagnosed with Hodgkins Lymphoma at age 13 and her experience continues to help other children with cancer through her book and advocacy work.
Laurie Johnson, Professional Advisor: Thinking Outside the Box
Childhood Cancer Talk Radio interviews Laurie Johnson, author, psychic adviser, and teacher of the metaphysical arts; Laurie addresses the issue of childhood cancer and cancer in general and what that means in the greater scope of our reality. Karma, life lessons, reincarnation, pre-lifetime agreements are included in the discussion, and also the importance of realizing there is no “fault” or “mortal moral cause” of cancer, a particularly troublesome topic for parents of children so diagnosed. Two examples of life situations for families of a child who was diagnosed and passed on were investigated by Laurie with her expertise and feedback for the parents. For more information about Laurie, or to read her book, “Into the Aquarian Age: Understanding the Consciousness Shift” visit www.lauriejohnsonpsychic.com.
4000 mi
CCTR interviews Jesse Shumaker, extremely brave and loving dad who just lost his daughter and only child Madelyn to the deadly killer DIPG. Featured today is the great "Ride for DIPG", currently underway and championing 4000 miles across the United States beginning in Oregon, and ending in Virginia Beach VA sometime in August 2016. Jesse is founder of the Nebraska Chapter of The Cure Starts Now, and the goal of the RIDE for DIPG is to raise $16,000.
Ellie Waters: Living with Cancer as a Teen
Fifteen-year old Ellie Waters talks with us from the UK about life as a teen with cancer and the challenges of alveolar rhabdomyosarcoma. Ellie has a twin sister Olivia, brother Bailey, and 3 more step-brothers from her parents new marriages. Mum Samantha joins us also to speak to the challenges brought to family living when a child is diagnosed with cancer.
Morgan Platt defies Glioblastoma
CCTR interviews Morgan Platt, 12 years old and 5 year survivor of Glioblastoma Multiforme--GBM--brain tumor. Her mom Kathy and brother Kyle tell us about life with the process of treatment with Morgan, the challenges and burdens, and the hope--of which Miss Morgan is blessed with an abundance! Morgan is truly an inspiration to all of us and is CCTR's "heroine of the week!"
Kathy Riley,
CCTR Interviews Kathy Riley, founder of We Can Pediatric Brain Tumor Network. We Can was formed 20 years ago by Kathy Riley and Gigi McMillan, mothers whose sons were in treatment for brain tumors. They had staggered alone, as many parents do, through the trauma of treatment and the struggle to cope with the changes they saw in their children. They found in each other an invaluable resource for information and support, and wanted to extend this opportunity to other families. We can has since grown from a small group of parents sponsored by a single hospital to an independent organization that serve hundreds of families annually throughout California.
ABC2: Creativity in Investments and Research 05-12-2016
Max Wallace, President and CEO of ABC2, Accelerate Brain Cancer Cure, talks about founder and venture capitalist Dan Case who had been afflicted with, and ultimately died of brain cancer. ABC2 has for a model Dan's genius for taking risks fearlessly and applying the venture approach to brain cancer research and treatment, the "Valley of Death" where such funding is desperately needed, coining the term "Venture Philanthropy." Max also talks about some of the most innovative and potentially cure-contributing research projects which ABC2 is currently supporting. Visit ABC2.org for more information.
CCTR interviews Jonathan Agin and Dr. Charles Keller at cc-TDI 05-05-2016
Creative Solutions to problems in treating childhood cancer with the Childhood Cancer Therapy Development Institute, cc-TDI, devoted to making all forms of childhood cancer survivable. Co-Founder, advocate, and writer for kids with cancer Jonathan Agin and Scientific Director Dr. Charles Keller talk with CCTR.
Owie BowWowie brings Hope 04-28-2016
CCTR interviews Gina Renay, author, mother and grandmother, and founder of Owie BowWowie and Friends Foundation, a non-profit dedicated to supplying comfort to children with life-threatening illnesses in the form of an adorable stuffed-toy doggie named Owie-BowWowie. Stories of comfort and new hope for children are featured as Owie is getting ready for a new launch in the world of Childhood Cancer Awareness.
Congressman Knight's HRes586 and Runner's Roundtable 04-21-2016
CCTR is on the ROAD with the RUN for HRes586! Special guest Congressman Steve Knight explains the importance of this legislation that he authored, National DIPG Awareness Week and more consideration for those in urgent need of solutions, and our kids. A reunion of runners from around the country--Brian Jones, John McKay, and Everett Smith explain their passion for running for kids with cancer and how they help the awareness movement.
"Realities of DIPG" 04-14-2016
Jaime King, mother of Katie(7), and Mark Landis, dad to Parker (5), describe the realities that parents of children diagnosed with DIPG, diffuse intrinsic pontine glioma, face today. HRes586, the importance of advocacy and the need for change are featured, due to the neglect of these terminally ill children for decades by our medical research system in the United States. DIPG is dubbed "cancer's death-row" for kids.
CCTR interviews Dr. Kathy Warren(NCI) and Michael Antonellis(NBTS)
CCTR interviews Dr. Kathy Warren (NCI) about her work and research into solutions for DIPG, one of the deadliest and most elusive cancers to treat. Then, with a focus on brain tumors, Michael Antonellis Director of Communications for National Brain Tumor Society explains upcoming "Head to the Hill" days for advocates descending upon Washington in early May, Brain Tumor Awareness Month.
CCTR interviews Paul Miller, volunteer for St. Baldrick's Foundation
Paul speaks in depth about his commitment to children with cancer, to speak for them and to carry the message that they are being systematically ignored by our medical research system. Paul volunteers for St. Baldrick's Foundation, which gives most of it's income to research and is the largest contributor in the private sector to pediatric cancer research, unlike the biggest cancer charities like ACS, with significant administrative salaries and giving less than 2% to pediatric research.
Part II of discussion with Gerry Tye of Sydney, Aus.
Gerry Tye, health care professional, advocate for kids with cancer, father...talks with us about hope, the realities of terminal childhood cancer, and the cutting edge of research: pediatric brain cancer. How parents and childhood cancer organizations are single-handedly funding the most urgently needed cancer research for our kids today.
Gerry Tye, Advocate Part I
Part I: Advocate for children with cancer Gerry Tye shares his the experience with his son Talin, diagnosed with DIPG in 2012, and for parents the importance of trusting one's instincts regarding one's own child when confronted with medical protocol for terminal illness. Gerry supports children diagnosed with cancer and their families in Australia and New Zealand.
George Dahlman of the Children's Cause
George Dahlman, CEO of the Children's Cause for Cancer Advocacy, talks about the importance of advocacy in affecting change in legislation and the way our Administration, Congress, and Government Agencies communicate to better accommodate the needs of our children with cancer. Host Janet Demeter enjoys a rant about the "Great Cop-Out of Capitalism" for our kids with cancer, as numbers are often used as the excuse for the decades of systematic neglect. Hopeful solutions are emerging for seemingly impossible, age-old problems.
Mattie Miracle Foundation: Helping Families
Peter Brown and Victoria Sardi-Brown describe how their experience with their son Mattie, who was diagnosed with osteosarcoma and died at the age of 7, inspired the current work of Mattie Miracle Cancer Foundation to establish and implement psyco-social standards of care for pediatric cancer patients and their families.
Tracy Ryan of CANNAKIDS and Saving Sophie
CCTR interviews Tracy Ryan, CEO of CannaKids, an organization dedicated to providing the highest quality guidance, care, and cannabis medicine for seriously ill patients, particularly pediatric cancer patients. CannaKids was inspired by Tracy's daughter Sophie, who was diagnosed with brain cancer at 8 1/2 months old, and is a living testament to the curative powers of cannabis when conventional treatment fell short.
Kira Spedale Foundation and Experimental Treatment for DIPG in UK
Lisa Spedale reveals the heartwrenching motive for her involvement in one of the most genius advancements in neurotechnology in the history of the science. Leo Somerville of technology company Renishaw was changed forever by the heart of one little girl, Kira.
Keira Wrenn(6), Brave Pioneer in UK Experimental Treatment
Emma Wren of Alford UK, explains the realities of a DIPG diagnosis for her daughter Keira, and the experimental program with which Keira is involved to combat the deadly disease. Sharon Kane of "Funding Neuro", joins us to discuss the technical details of the procedure and the origins of this research, and Funding Neuro. The fate of Keira's future peers with brain cancer rests upon her pioneering journey. Download podcast: bit.ly/CCTR2-11
Jonathan Agin and Dr. Charles Keller with cc-TDI
CCTR interviews Jonathan Agin, Development Liaison and General Counsel for the Children’s Cancer Therapy Development Institute, or CC-TDI, a non-profit biotech company dedicated to eradicating childhood cancer in all forms. Co-Founder and Scientific Director Charles Keller MD also joins us to describe the very innovative and proactive design of this company, addressing the “pre-clinical gap” in our medical research system that has resulted in the neglect of the deadliest childhood cancers, many of which have been awaiting effective therapy development for decades.
Lisa DeLong, Author, Bereavement Facilitator
Lisa Solis DeLong, author, nurse, bereavement facilitator, patient advocate, and last but not least--mom!--joins us for a candid discussion of her experience raising two sons with cancer, loss and faith, and how she found new joy in life after losing her son Justin.
Ellyn Miller of Smashing Walnuts Foundation
10 year old Gabriella Miller was herself a strong advocate for children with cancer, and the inspiration for Smashing Walnuts Foundation; sadly, she passed away from DIPG in October of 2013. The following April, 2014, President Obama signed into law the Gabriella Miller Kids First Act which allocates funding for important pediatric disease research through the National Institutes of Health, to the tune of $12M in the next 10 years. Her legacy is strong through the continuing advocacy work of her mother, Ellyn Miller, who tirelessly lobbies members of Congress and the NIH to achieve a system that prioritizes cancer research for children.
McKenna Claire Foundation and 'Katherine the Brave'
Jaime King describes the difficult experience of the terminal diagnosis for daughter Katie with DIPG, the most aggressive pedatric brain tumor. The experimental drug PANABINOSTAT has shown great promise in battling the disease but Katie's time is running out for access to the expensive treatment.
