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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
The House that Hope Built in Zurich, with Philip Manduca

Upon the diagnosis of his daughter in 2015 with the deadliest pediatric brain cancer DIPG, Philip Manduca, a financier residing in London, UK, was supplied with the standard of care "death sentence" by the medics. He realized that he was on his own in the mission to prolong and even save his daughter's life. He pioneered experimental treatment schedules, and he argued that dosages and drug concentrations mattered even more than the drug itself. Most of all, he realized from the first prognosis that he had no time to lose by choosing old therapeutic pathways to a constant morbid outcome.

Since then Philip has served as treatment advisor with the DIPG Treatment Advisory Council, and has been instrumental to the development of the new, international treatment program for DIPG and mid-line glioma at Zurich Children's Hospital in Switzerland, offering personalized treatments and multi-modality developments in the latest research in pediatric neuro-oncology. 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.

Philip shares in all candor the courage that it takes to speak truth to power and take the action necessary to facilitate real change, and most importantly, hope for children with brain cancer, the leading cause of death in children with cancer.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 Kids 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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
“Moonshot4Kids” at Monje Lab: DIPG Families Advocate for Increased Pediatric Cancer Research Funds

June 7, 2019 | Mia Brozovich Nacke 

 

June 7, 2019 | Mia Brozovich Nacke

COMMUNITY OUTREACH, EVENTS, PEDIATRICS, RESEARCH AND INNOVATION.

Families who have lost children to Diffuse Intrinsic Pontine Glioma, a fatal brain tumor with a median survival of 9-10 months, met with Stanford pediatric neuro-oncologist Michelle Monje to learn about new clinical trials and express optimism that accelerated funding will yield treatment results.

DIPG families visit the Monje Lab. From left to right, Marisa Martinez, Xavia Martinez-Lusinchi, Kirsten Finley, Zach Major, Robby Larson, Keagan Finley and Janet Demeter.

On May 17, DIPG Awareness Day, four families who donated their late children's brain tumor tissue to science convened at Stanford to hear firsthand from pediatric neuro-oncologist Michelle Monje, MD, PhD, about research developments and new clinical trials that may hold the key to unlocking treatment for Diffuse Intrinsic Pontine Glioma (DIPG). 

DIPG, a highly aggressive tumor of the brain stem, is the leading cause of childhood brain tumor deaths. There is no cure for DIPG; radiation treatment can extend a child's life by mere months.

To help call awareness to DIPG-and learn more about groundbreaking research-congressional staff from Sacramento and Washington, DC, joined DIPG families in Stanford's Lorry I. Lokey Stem Cell Research Building for a presentation by Monje, followed by a tour of the Monje Lab.

During a Monje Lab tour, Michelle Monje, MD, PhD, center, talks with Brian Perkins, District Director, Office of Congresswoman Jackie Speier (second from left), and visiting families who are raising awareness and funds for DIPG.

Joining the roundtable were the offices of U.S. Representatives Jackie Speier and Anna Eshoo, California State Senators Jerry Hill and Scott Wilk, and California Assembly member Marc Berman.

Several of the families present have started foundations to support DIPG research and assist other families in navigating the brutal illness. They know all too well that a DIPG diagnosis is fatal.

Each year in the U.S., DIPG strikes 200-400 school-aged children. DIPG peaks at around age 7, but occurs in both younger and older children. According to Monje, we now know DIPG can also strike adults. With standard therapy, median survival is 9-10 months. Five-year survival rates are below 1 percent.

Discoveries drive human trials

Researchers at work in the Monje Lab, part of the Department of Neurology & Neurological Sciences at the Stanford University School of Medicine.

Identifying effective chemotherapy for DIPG has been challenging. Because the tumor grows in the brainstem, a region that controls essential body functions such as breathing and heartbeat, and because these cancer cells grow tangled with healthy cells, the tumor cannot be surgically removed. While other pediatric cancers have seen vast improvements in survival rates with new treatments, the survival rates for DIPG children have not improved in 40 years.

Monje, who has been a leader in DIPG research for the past 10 years, is hoping to change this. In 2009, Monje's research team was the first in the world to grow laboratory cultures of human DIPG cells from deceased donors. This gave scientists their first opportunity to study the cells' growth, as well as a platform to identify and test chemotherapy agents that fight DIPG. Monje's team also created mouse models of DIPG to allow detailed studies of the tumor's growth and to test possible treatments.

The team is currently running a Phase 1 clinical trial in children with DIPG of the drug panobionstat, which slows DIPG growth and increases survival in mice with the tumor. Recently, Monje and her colleagues demonstrated that engineered immune cells, called chimeric antigen receptor T cells or CAR-T cells, can eradicate several types of brain tumors in mice, including DIPG. The team is planning a human clinical trial for this treatment.

A horizon of hope

Speaking to the families who had traveled from as far away as Florida to raise awareness for a disease that strikes at the heart of childhood, Monje asked, "Why have we failed DIPG children for so long?

"DIPG is ‘the worst of the worst.' Historically, DIPG has been difficult to study. Eleven years ago, when I started studying this disease, there were no cell cultures, no experimental mouse model systems. Finally, we have the resources to begin to untangle the biology of this disease." 

Kirsten Finley, Marisa Martinez and her daughter Xavia, and Janet Demeter share a moment together during DIPG Awareness Day. 

"As we see in this room, that families of children affected by DIPG are extraordinarily giving. Families who have been affected by this disease have pushed the needle forward."
Michelle Monje, MD, PhD

The donations of DIPG families will help other generations of children, said Monje. Research has already shown that DIPG shares a mutation with other high-grade gliomas like spinal cord and thalamic gliomas, which has led to a reclassification of these cancers. These somewhat less common but still fatal diseases may benefit from DIPG research.

With the aim of giving DIPG children a longer period of good quality of life - and envisioning a cure within our lifetime - the Monje Lab openly shares tumor tissue resources that generate cell cultures with over 200 labs around the world.

Meet the Kids: Images of children lost to DIPG, including Kayne Finley (top left), Jack Demeter (top right) and Zamora Martinez-Lusinchi (middle row, second from right)

According to the National Pediatric Cancer Foundation, only 4% of federal government cancer research funding goes to study pediatric cancer. The Monje Lab benefits from diverse funding streams, including from the National Institutes of Health (NIH); DIPG families have also stepped up by raising research funds. But the funding gap for DIPG, and pediatric cancer research in general, remains significant.

Congresswomen Speier and Eshoo, longtime supporters of increased federal funding for childhood cancer research, both addressed letters to the families gathered at the event and the Packard Children's Hospital community. Noting that DIPG Awareness Day is intended to encourage research into DIPG and pediatric cancers in general, Speier praised the Monje Lab's groundbreaking work. 

Stanford pediatric neuro-oncologist Michelle Monje, MD, PhD

"Thanks to the work of Stanford researchers, including notably Dr. Michelle Monje and her team, there is reason for hope."
U.S Congressional Representative Jackie Speier

"What we need to do," Speier suggested, "is support NIH research into this important childhood disease, and to encourage the FDA to support the testing and ultimately the approval of needed treatments."

Eshoo encouraged the families to continue their advocacy, which she acknowledged is vitally important to children facing deadly diseases.  "Children are not just small adults," stated Eshoo, adding that drugs need to be studied specifically for their use in children.

The State Senate and Assembly offices of Jerry Hill and Mark Berman presented Monje and the Monje Lab with Certificates of Recognition to acknowledge the impact of the Monje team's research. 

Moonshot for kids

The families spoke candidly about how meaningful Monje's work is to their mission to encourage public engagement and support for DIPG research, trials and treatment. Having faced DIPG's devastating statistics head on, they agree that greater awareness and scaled-up funding would be game-changers.

"When my son Kayne was diagnosed," said Kirsten Finley, "it felt helpless, hopeless and like nothing you did would make a difference. Your leadership and commitment to saving these children, Dr. Monje, makes a huge case for more NIH funding. We have to attack and address it."

To draw attention to DIPG and raise research funds, Kayne's brother Keegan is bicycling cross-country with friends. "We all know that this disease is underfunded," he told the audience. Older than most DIPG patients when diagnosed at age 17, his brother became an advocate for brain cancer awareness while undergoing clinical trial treatments. Kayne used his 366 days after diagnosis to start college, speak to schools and businesses about DIPG, and meet with his state's governor to urge funding for childhood cancer. 

Marisa Martinez comforts her daughter Xavia, in front of a photo of her late daughter and Xavia's sister Zamora, who was diagnosed with DIPG at age 7.

Janet Demeter, who lost her 3-year-old son Jack to DIGP, hosts a talk radio show dedicated to childhood cancer and raises awareness of DIPG through her foundation. Demeter coined the phrase "Moonshot4Kids" to evoke the Cancer Moonshot initiative and illuminate how we must aim high to fast-track new therapies for children with cancer.

"Every child is a life, not a number. Someday in the future, the experience for families with a DIPG diagnosis for their child will be one of hope."
Janet Demeter, mother of DIPG child Jack

On May 23, the United States Senate passed S. Res. 223, a resolution expressing support for the designation of May 17, 2019 as "DIPG Pediatric Brain Cancer Awareness Day." On February 12, Rep. Jackie Speier and Rep. Dave Joyce introduced a similar bipartisan resolution, H. Res. 114, in the House of Representatives. H. Res. 114 currently has 42 cosponsors.

To learn more about how to raise awareness and funds for DIPG Research in your community, contact Lucile Packard Foundation for Children's Health: https://supportlpch.org.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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).

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 that 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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Lisett Bickford, Project Manager Soft Cell Sarcoma, cc-TDI

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Colorado Treasures: The Morgan Adams Foundation and Cops Fighting Cancer

Denver CO--Morgan Adams Foundation co-founder Joan Slaughter joins us to share this organization's 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 world's most challenging frontiers.

Partnering organization Cops Fighting Cancer, founded and led by Officer James Seneca, AML survivor, of the 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 which Cops Fighting Cancer provides. 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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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!"

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Barbara Salzman and The Jester

Barbara Saltzman joins us from Palos Verdes CA, home of The Jester & PharleyTM 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 has been honored with multiple awards of national acclaim for it's programs for literacy and ill children.

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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 which included two years of chemotherapy, three major surgeries and a partial amputation of his leg. Trey lost his life to the disease in October of 2006, and his family is determined to cure osteosarcoma with an attitude of happiness, optimism, and faith which Trey insisted upon, in living his life to the fullest while he was here. 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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 in1978, 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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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!

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 long-term survivor of DIPG.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
#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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
"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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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, which is the leading disease-related cause of childhood death 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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Part I: "Project Haystack" at Children's Cancer Therapy Development Institute

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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
"The Heart of Luminous", by Luna Zin: Debut of an Author

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.

Link to e-book HERE

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

Here, you may refer also to our 4-26-2018 podcast and article for more information about Hike4Pennies.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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, and 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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
"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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

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."

Full article: http://jacksangelsfoundation.com/?p=6063

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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, diffuse intrinsic pontine glioma, for which the median survival time is 9 months post diagnosis.  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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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! 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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!

 

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Theodore Lives with Juvenile Batten CNL3 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 which only a sibling can bring. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

More about Osteosarcoma through the courage of Cheyenne, a must-see:  https://vimeo.com/232541303

The Tanneries #GoMakeItBetter:  https://www.youtube.com/watch?v=jg2GiGKrbDI

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 considerations 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. 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
"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 a 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 during his time working for the US Senate; 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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

The Carson Leslie Foundation is dedicated to collaborative research for pediatric brain cancer and supporting children and the quality of life that they enjoy with their families with special events and programs.  Annette looks forward with us to the 8th Annual Summit for Childhood Cancer with the Childhood Cancer Caucus and the Golden Toast which celebrates our greatest heroes for kids in Congress, on Thursday, September 14th at 9am in the Rayburn House Office Building on Capitol Hill.  Those interested in any way in childhood cancer awareness in the Washington DC metropolitan area are warmly encouraged to attend.  For more information about the summit, visit www.childhoodcancer-mccaul.house.gov.  Discover the latest triumphs of the Carson Leslie Foundation and their work with CPRIT, the Cancer Prevention and Research Institute of Texas, shared in this podcast, at www.carsonlesliefoundation.org.

Carson Leslie's book "Carry Me" was published 6 days before his death in 2010, and it continues to supply unique inspiration and unparalleled support to children with cancer and their families.  It can be found on the foundation website

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.  

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 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!

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 for 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.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. There are 10 identified types of Batten Disease, which is itself one of approximately 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats). Because of these damaged cells, patients with Batten disease suffer progressive neurological impairment, which includes seizures, visual impairment/blindness, personality and behavior changes, dementia, loss of motor skills and the ability to walk, talk and communicate. The arc of Batten disease can vary tremendously for each person due to widely varying genetic mutations; until more progress is made in research and treatments, Batten invariably results in an early death.

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!

In the United States, visit www.BDSRA.org for more information about the Batten Disease community, clinical trials, current research, and support. In the UK, www.bdfa-uk.org.uk/; currently there are no support systems for the afflicted nor is the disease recognized to allow State provided medical assistance. Childhood Cancer Talk Radio is reaching out to the greater global community for financial ingenuity and assistance for helping families like Theodore's in a country where gofundme and other such platforms for crowdfunding do not operate.

Please contact cctalkradio@gmail.com to forward helpful information or financial arrangement proposals for the family. Thank you!

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Elizabeth Psar: Mom on a Mission Against DIPG

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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
BELAC 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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
"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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
MaxCure and the Run for the White House

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! 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
#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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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! 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

 

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
The 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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.  
Keira's uncanny zest for life and love for her friends and family continues to light up the lives of all with whom she meets.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Zamora Moon: Living with DIPG

CCTR intereviews Marisa Martinez, mom to Zamora Moon, a little 9-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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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 for a complete recovery.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
“Jaime’s Journey–Cancer from the Voice of a Sibling”, by Sharon Wozny

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. "Jaime's Journey" can be purchased on Amazon.com, and there is more demonstrative information about it on this Youtube link. Visit www.childrencancernetwork.org to learn more about the Children's Cancer Network.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
#KidsCancerPain 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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Nancy Keene and Anne Spurgeon discuss new book, Childhood Cancer: A Parent's Guide to Solid Tumor Cancers

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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

Midway through the show, our host received a notice from the Office of Science and Technology Policy with the following attachment: 2016childhoodcancer.prc.rel President Obama's Childhood Cancer Awareness Proclamation 2016 had just been signed, and it was read on the show.

In our final segment we were joined by "Driven Change", Ronnie Duvall, Childhood Cancer Awareness activist more than half-way through his 50 state journey.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
The Legislative Landscape of Childhood Cancer Drug Development: Jonathan Agin JD

CCTR interviews Jonathan Agin JD, father of Alexis who perished to brainstem glioma 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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Michael Esposito: Niagra Falls leads the US for Childhood Cancer Awareness Month

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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Live from cc-TDI Pediatric Nanocourse 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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Step UP! Action and Awareness: Advocacy with Neal Rourke and Jesse Robinson

CCTR talks with Neal Rourke and Jesse Robinson about the Childhood cancer Awareness Movement and the upcoming September, Childhood Cancer Awareness Month.  Lighting, "Going Gold", the Maggie Project, and Tyler Robinson Foundations's Project CANCO are featured.  CANCO is a bike ride planned to begin Sept. 1 from Niagra Falls, Canada to Key West, FL for 2200 miles. Gifts of $10,000 will be given to needy families with a child afflicted with cancer along the way, for a total of $100,000. Action is underlined as being just as important as Awareness for changes to occur in the system to better accommodate our children with cancer.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Dr. Mark Swouweidane: On a Mission to Cure DIPG

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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Driven 2 Make Change: Activism on the road for our kids!

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 meagre 4% afforded to childhood cancer research by the National Cancer Institute.  CCTR's Hero of the Week!

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Creating Hope: Nancy Goodman

CCTR interviews foremost advocate for children with cancer, lawyer, and mom to Jacob, forever 10, 2009, Nancy Goodman.  Nancy brings us news of the RACE for Children Act, a reform of the Pediatric Cancer Research Equity Act or PREA which she champions, and it's to go to both House and Senate 7/14/2016.  Nancy is a true problem solver in her can-do approach to lassoing the pharmaceutical industry with incentives to support and fund pediatric cancer research.  In her work, Nancy appeals to the intrinsic goodness of people who truly want to help children with cancer, yet are strapped by the system.  In "finessing the system", solutions are found that support other proactive missions to prioritize pediatric cancer research.  Also, inside news of the Washington DC Moonshot Taskforce Summit, and that Washington will host the first Pediatric Moonshot Summit, which was news to all of us.  Good will, hope, and information on the 2016 Curefest and Summit for the Congressional Caucus for Childhood Cancer are featured.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Laurie Johnson, Professional Psychic Advisor

CCTR interviews Laurie Johnson, psychic advisor and teacher of the metaphysical arts, who addresses the issue of childhood cancer, and cancer in general and what that means in the greater scope of our reality.  Karma, life lessons, re-incarnation, 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.  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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR6-16: The Ride for DIPG

CCTR interviews Jesse Shumaker, a brave and loving dad who just lost his only child Madelyn 6 months ago to DIPG, the deadliest brain cancer with no survivors.  Jesse founded the Nebraska Chapter of the Cure Starts Now, an organization dedicated to funding research for the "homerun cure" for cancer.  Jesse's brother Morgan is currently on the road with Team Maddie, 4 cyclists tackling 4000 miles of road across the United States, having begun June 1st in Oregon, and slated to finish in Virgina Beach VA sometime in August.  The "Ride for DIPG" has for it's goal to raise $16,000 for DIPG research.  To follow the team and donate to the Ride for DIPG, visit www.RideforDIPG.org.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Team Ellie from the UK

From the UK, Ellie Waters, 15, joins CCTR to talk about her journey with alveolar rhabdomyosarcoma and life as a teen with cancer; her mum Samantha Waters, joins us also.  Ellie has a twin sister Olivia, and brother Bailey from her mum's new marriage. and Ellie has 2 step-brothers from her dad's new marriage, so it's quite a large extended family of support and it keeps Samantha extra busy!  You can follow Ellie's journey at www.teengirllivingwithcancer.blogspot.co.uk, and be inspired by this beautiful and strong young girl's story.  On social media, TeamEllie Blog on facebook, teamellie_blog on Instagram, and TeamEllie on youtube.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR Interviews Morgan Platt, 12 yr. old and 5 year survivor of GBM

Morgan Platt, 12 years old, 5 year survivor of GBM from Avon CT tells CCTR about her finishing a fundraiser for her two favorite charities, to the tune of $14,000.  Truly and inspiration, Morgan undergoes continuing chemotherapy and is beset by many sleepless nights and nausea...but her bright and shining personality cast out any cloudy thinking.  Indeed, her positivity is unusually bright and pervasive and is present in all who know her.  Mom Kathy relays a bit about how difficult the constant knowledge of the deadliness of GBM, and Morgan's unusual beating of the odds can be very difficult despite the outer appearance of wellness.  Brother Kyle talks about his upcoming charity project with his school, proud of his creative success.  Featured:  Tyler Robinson Foundation, Sunshine Kids 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Kathy Riley and We Can Pediatric Brain Tumor Network

Kathy Riley talks to CCTR about We Can Pediatric Brain Tumor Network, which began 20 years ago with the support and camaraderie between mothers of pediatric brain tumor patients.  The support and healing which came from their sharing was so helpful that they wanted to share it with others.  The pediatric brain tumor community is small and underserved.  Parent-based support is crucial and irreplaceable for families of the newly diagnosed child.  Kathy explained how We Can grew and developed to now serve in northern and southern California in providing a number of essential programs of support for children with brain tumors and their families.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
ABC2: Funding Creativity in Brain Cancer Research

Max Wallace, President and CEO of ABC2--Accelerate Brain Cancer Cure, talks about founder and venture capitalist Dan Chase 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 deperately needed, coining the term venture philanthropy.'  Max also talks about some of the most innovative and potentially cure-contributing reearch projects which ABC2 is supporting.  Visit ABC2.org for more informations.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
cc-TDI: Exciting New Prospects for Children with Cancer (Science)

Today's show features creative solutions to difficulties in treating childhood cancer with the Children's Cancer Therapy Development Institute, cc-TDI, devoted to making all forms of childhood cancer survivable.  Co-founder, advocate for kids with cancer, and writer Jonathan Agin, and Scientific Director Dr. Charles Keller, talk with CCTR.  Learn about a new research project for DIPG, rhabdomyosarcoma; new scientific breakthroughs in procedure and feasibility are highlighted.  Stay tuned for Part II!

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Gina Renay and Owie BowWowie

Darkness to light, despair to a single smile...these transformations caused by magical stuffed toy-doggie Owie BowWowie are regular occurrances when he's around!  Helping kids and families in their most difficult moments, Owie's comfort brings love and support to children with critical illnesses, and their families.  Listen as Owie plans his new debut and launch in the world of childhood cancer awareness!  Founder of Owie BowWowie and Friends Foundation Gina Renay explains how Owie came to be, and how he is finding his place in the world.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Congressman Knight and HRes586, and the Activist Runner's Roundatable 4-21

 

We are on the road, literally, with Childhood Cancer Talk Radio!  Congressman Steve Knight (R-CA-25) joins CCTR to talk about HRes586, National DIPG Awareness Week, and the importance of the bill at this time--from the author himself.  Then we are joined by a runner's roundtable of activists for children with cancer, including John McKay, Brian Jones of the Run for the Whitehouse, and Everett Smith, currently running 200 miles in Southern California for HRes586 and DIPG Awareness.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
The Realities of DIPG

Jaime King, mother to Katie(7), aka Katherine the Brave, and Mark Landis, father to Parker (5), describe the realities faced by parents of DIPG-diagnosed children today.  DIPG, diffuse intrinsic pontine glioma, is an invariably terminal pediatric brain tumor with no change in treatment protocol for over 40 years.  Parents discover routinely that there are no solutions for their child because, "the numbers aren't great enough for investors."  With candid descriptions of the new realities faced after diagnosis, the parents explain how they cope and what they must do to keep going and to understand the meaning of hope.  Their voices are a testament for the importance of HRes586, National DIPG Awareness Resolution, advocacy, and change for these children on cancer's literal death-row for kids.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Dr. Kathy Warren on DIPG, Michael Antonellis of National Brain Tumor Society

CCTR presents Dr. Kathy Warren, top researcher in pediatric neuro-oncology at the Center for Cancer Research at the National Cancer Institute (NCI), who discusses the history of DIPG research and the nature of this strange and misunderstood tumor, challenges to treatment, and hopeful new lines of research for effective therapies to be developed.  We were treated to a brief lesson in pediatric brain tumors by one of the worlds greatest experts on the subject of DIPG, diffuse intrinsic pontine glioma.  Dr. Warren stressed the importance in parent advocacy for encouraging world-wide scientific collaboration in the research.  We focused brain tumors and advocacy for the 2nd half of the show with Michael Antonellis, who described the unique opportunities that the National Brian Tumor Society (NBTS) for those called to advocacy, encouraging participation in the upcoming "Head for the Hill Days" in Washington DC.  NBTS advocates for the need of research for both adult and pediatric brain tumors, and explained the many differences complicating the treatment landscape.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR interviews Paul Miller of Littleton CO, advocate and hero for kids with cancer

CCTR asks Paul Miller about his extraordinary commitment to speaking out for children with cancer, and about the truth of our medical research system:  our kids are ignored, and have been for decades.  Paul talks about his volunteer work with St. Baldrick's Foundation, which, unlike other large cancer charities like ACS which pays significant administrative salaries, St. Baldrick's is the #1 funder of childhood cancer research with over 80% of it's budget affecting research.  He talks about the awareness of this reality that children face--their lives being less important than investment returns to our system--and the prospect of death or a seriously impaired life, and his dedication to those children.  "We are their only hope".

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Gerry Tye: Father, Advocate for Children with Cancer--Australia's Best

Gerry Tye of Sydney, Australia talks to CCTalkRadio about the experience of an exceptional child lost to an exceptional disease...DIPG is the "Angel Disease" and we hope that the loving, living memory of our children continues to inspire advocacy work for children with cancer and their families that exacts progress where those currently struggling need the support and leadership.  The importance of "end-of-life" care and a strategy that protects your sense of decency and humanity.  Hope for new collaborations in research efforts to save our children and to insist on prioritizing the fight for their survival.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTalkRadio Presents: Gerry Tye, advocate for kids with cancer

Advocate for children with cancer Gerry Tye shares 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.  Next week's edition is Part II of our conversation :)

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR Presents George Dahlman of The Children's Cause Cancer Advocacy

George Dahlman 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.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR Presents Mattie Miracle

Peter Brown and Victoria Sardi-Brown tell the story of how their foundation began in 2009 after the death of their precious boy Mattie, 7, who had been diagnosed with osteosarcoma.  Mattie Miracle Foundation has a powerful advocacy mission emphasizing the need for psycho-social standards of care for children with cancer and their families.  The Foundation coordinated a world-wide, interdisciplary project to present evidential experience for the need of these Standards.  Their work continues strategizing the implementation of these standards while giving support to families affected by childhood cancer in the Washington DC metropolitan area.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR Presents Cannakids and Saving Sophie

CCTR interviews Tracy Ryan, founder and CEO of CannaKids, an organization dedicated to providing the highest quality guidance, care, and cannabis medicine to seriously ill patients, especially pediatric cancer patients.  CannaKids was inspired by Tracy's daughter Sophie, who was diagnosed at 8 1/2 months with brain cancer, and is a living testament to the curative powers of cannabis when conventional medicine fell short.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR2-18-2016 Kira Spedale Foundation

Lisa Spedale reveals the heart-wrenching motive for her involvement in one of the most genius technological advancements in the history of neuroscience.  Leo Somerville of technology company Renishaw Inc was changed forever by the heart of one little girl, Kira, afflicted with terminal DIPG.  Her brave fight aided the development of a procedure which promises longer and better quality of life for children with DIPG; sadly typical of pediatric cancer, the only barrier is funding.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
New Hope from the U.K. for Brain Cancer

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. 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR interviews Jonathan Agin and Charles Keller MD of CC-TDI

Thursday, Feb. 4 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 its forms.  Jonathan is an attorney by trade and has become one of the united State's foremost advocates for children with cancer following the death of his daughter Alexis in January of 2011.  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.  For more guest info, visit:  bit.ly/CCTRguests

To support Jack's Angels campaign for DIPG research at CCTDI, visit:  bit.ly/Relay4Jack

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR discusses loss and faith with Lisa DeLong, and how to live, find balance and joy once more.

Lisa Solis DeLong

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.  Join us Thursday, January 28 at 4pm Eastern, right here on Toginet.com.

Lisa's Book, "Blood Brothers"-a memoir of faith and loss while raising two sons with cancer:

     http://bit.ly/LisaDelong  (on amazon.com)

Tedx video on "Death Cafe" link:  

     http://bit.ly/lisadelong   (on youtube)

Full article:  http://jacksangelsfoundation.com/?p=3926

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR talks with Ellyn Miller of Smashing Walnuts Foundation for pediatric brain tumor research.

1/21/2016

Ten-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 resarch through the National Institutes of Health, to the tune of $12M in the next 10 years.  Her legacy is strong throught 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 resarch for children.

 

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
CCTR Presents: Jaime King and daughter Katie, Kristine Wetzel of McKenna Claire Foundation

1/14/2016

Jaime King describes the difficult experience of the terminal diagnosis for daughter Katie with DIPG, the most aggressive pediatric brain tumor.  The experimental drug Panobinostat has shown great progress in battling the disease but Katie's time for access to the expensive treatment is running out.

Kirstine Wetzel shares her experience with the power of Community and their success in raising funds for pediatric brain tumor research.  The McKenna Claire Foundation gives support to families like Katie's in the unending battle to raise awareness for the urgent need for a cure.

Return to the Childhood Cancer Talk Radio Show Page
Link to Article
Recent Shows
Title Date
Creating Hope: Kids V. Cancer, Game Changer for Pediatric Cancer Research
11-07-2019
Luke's Legacy at Children's Hospital Colorado
10-31-2019
The Story Behind The Fairness to Kids with Cancer Act of 2019
10-03-2019
Childhood Cancer Caucus Summit 10th Anniversary Special Edition
09-26-2019
Swifty Foundation's "Gift from a Child" Program with Al Gustafson
09-12-2019
"Fry and Die, AML!"-with Julie Guillot and Michael Copley
09-04-2019
View All Podcasts
Connect with Us









Visit Us






About Janet


Blessed with varied interests and an artistic and musical upbringing, Janet had health challenges throughout her young adult life. Despite these she graduated Cum Laude from Wellesley College with an award of distinction for acting, and had also been a champion equestrian. She began a family with her husband Barry later in life, and had finally found happiness with daughter Sophie-Marie (3/12/06) and then baby (Jack 8/30/08). Five weeks after his birth, the family escaped a wildfire in which all worldly possessions were lost. The family relocated in December of 2008 to Agua Dulce CA where they currently reside.

Jack began to have unsettling symptoms at the age of 3; he was taken to Children's Hospital Los Angeles and was diagnosed with DIPG, or diffuse intrinsic pontine glioma, on Friday Oct. 28, 2011, indisputably the darkest experience of Janet's life. The outrage of it made her determined to find the good in the situation, and she asked God to "Put me to work!" After Jack's death, she remained determined to start working to find solutions to DIPG and incorporated Jack's Angels at the end of 2012; the Foundation began its work in 2013. Despite the fact that DIPG is responsible for the majority of brain tumor deaths in children, she had been told there were no solutions for Jack because "the numbers aren't great enough for investors." This remains the primary motivation in her advocacy work, to prioritize children's lives in our medical system in the United States.


Google+