Childhood Cancer Talk Radio Podcasts

Thursday 21st of September 2017
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.
Thursday 14th of September 2017
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.
Thursday 7th of September 2017
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.
Thursday 31st of August 2017
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.
Thursday 17th of August 2017
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.
Thursday 10th of August 2017
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.
Thursday 27th of July 2017
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.
Thursday 20th of July 2017
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.
Thursday 13th of July 2017
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!
Thursday 6th of July 2017
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.
Thursday 22nd of June 2017
“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.
Thursday 15th of June 2017
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.
Thursday 8th of June 2017
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.
Thursday 1st of June 2017
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.
Thursday 18th of May 2017
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.
Thursday 11th of May 2017
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.
Thursday 4th of May 2017
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.
Thursday 27th of April 2017
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.
Thursday 20th of April 2017
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!
Thursday 13th of April 2017
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.
Thursday 30th of March 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.
Thursday 16th of March 2017
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.
Thursday 9th of March 2017
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.
Thursday 2nd of March 2017
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.
Thursday 23rd of February 2017
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.
Thursday 16th of February 2017
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.
Thursday 9th of February 2017
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.
Thursday 26th of January 2017
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.
Thursday 19th of January 2017
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!
Thursday 12th of January 2017
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.
Thursday 5th of January 2017
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.
Thursday 29th of December 2016
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!
Thursday 22nd of December 2016
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.
Thursday 15th of December 2016
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.
Thursday 1st of December 2016
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.
Thursday 17th of November 2016
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.
Thursday 10th of November 2016
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.
Thursday 3rd of November 2016
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.
Thursday 27th of October 2016
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.
Thursday 20th of October 2016
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.
Thursday 13th of October 2016
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.
Thursday 6th of October 2016
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.
Thursday 29th of September 2016
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.
Tuesday 13th of September 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.
Thursday 8th of September 2016
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.
Thursday 1st of September 2016
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.
Thursday 25th of August 2016
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.
Thursday 18th of August 2016
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.
Thursday 11th of August 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.
Thursday 4th of August 2016
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.
Thursday 28th of July 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.
Thursday 21st of July 2016
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.
Thursday 14th of July 2016
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!
Thursday 7th of July 2016
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.
Thursday 30th of June 2016
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.
Thursday 23rd of June 2016
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.
Thursday 16th of June 2016
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.
Thursday 9th of June 2016
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.
Thursday 2nd of June 2016
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!"
Wednesday 18th of May 2016
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.
Thursday 12th of May 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.
Thursday 5th of May 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.
Thursday 28th of April 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.
Thursday 21st of April 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.
Thursday 14th of April 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.
Thursday 7th of April 2016
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.
Thursday 31st of March 2016
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.
Thursday 24th of March 2016
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.
Thursday 17th of March 2016
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.
Thursday 10th of March 2016
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.
Thursday 3rd of March 2016
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.
Thursday 25th of February 2016
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.
Thursday 18th of February 2016
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.
Thursday 11th of February 2016
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
Thursday 4th of February 2016
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.
Thursday 28th of January 2016
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.
Thursday 21st of January 2016
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.
Thursday 14th of January 2016
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.
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