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Welcome to Childhood Cancer Talk Radio powered by Jack's Angels Foundation where we talk about real experiences, advocacy news, developments in research, and today's heroes for kids!

For guest and promotional information, download our "Prospective Guest Letter."

Our primary purpose is to provide a powerful voice of hope in the advocacy/activist movement for our children with cancer, and to encourage more conversation in the world at large about prioritizing our children afflicted with cancer in our medical research system. Currently, very little of our government budget for cancer research benefits pediatric cancer directly, while cancer is the leading cause of disease-related death in children in the United States. The system is driven primarily for short-term investment profits rather than the long-term gains in creating new industry and jobs that scientific breakthroughs, and in this case a cure, would typically bring. 

We focus on what actions are being taken currently, by parents, advocates and activists, and our representative voices in Government on the behalf of children to prioritize them in our system. Our workers in the science and tech world devoted to helping create a more responsive system are welcome to share their news and innovations to greater public awareness and application. And of course, we invite our scientists on the front lines of research and clinical work to share their developments, new directions, and hope.

We work for the day when no parent hears there's no solution for their child because, "the numbers aren't great enough for investors."

 

Juliette's Journey of Healing and Hope

Marti Jaenke Dexter tells the story of her youngest daughter of four children, Juliette, described sweetly as her “gift from God.”  She was born on July 9, 2003 with two rare genetic conditions, Pierre Robin Syndrome and Mobius Syndrome.  Though one required surgery as an infant, Juliette had a  happy, healthy childhood and social life.  She was diagnosed in 2014 with Myelodysplastic Syndrome (MDS)with a very high probability of developing leukemia; the discovery of bone marrow fibrosis was tragically not in her favor for treatment.  The family did not give up hope and went through a Cord Blood Transplant which unfortunately failed.  Her second transplant that December resulted in GVHD to which she ultimately succumbed.  

Juliette left a legacy of healing and hope with her family which you may follow at "Juliette's Journey of Healing and Hope," on Facebook.  Marti plans to publish a journal book for children inspired by this journey, a tangible gift of their forever bond.  Our advocacy segment focuses on H.R.6556, legislation that supports the NIH Kids First Research Database, a crucial source of information and clues for the medical community of rare genetic pediatric disease and pediatric cancer.

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Dr. Vibhakar at Children’s Hospital Colorado; Morin Family Braves the Holidays after Recent Loss

“After symptoms that appeared suddenly and two visits to the pediatrician, Luke Morin was taken to the Emergency Department at Children’s Hospital Colorado. On April 8, 2018, Luke’s family received devastating news that there was an inoperable and very aggressive tumor in his brain called DIPG (Diffuse Intrinsic Pontine Glioma). Aggressive indeed. Two radiation attempts and seventeen days later, Luke lost his battle with DIPG. He was 5 years old..,” and thus began the Morin family’s journey with “Luke’s Posse,”dedicated to funding pediatric brain cancer research at the University of Colorado, Denver.

Dr. Rajeev Vibhakar, Luke’s attending physician at Children’s Hospital Colorado, joins us in this podcast to discuss the advances in pediatric brain cancer research that the Morin family supports through the Foundation at the Hospital.  DIPG, diffuse intrinsic pontine glioma, is one of the most challenging enigmas of pediatric cancer research today. Within 2 years of Luke’s passing, the family has raised tens of thousands for research; the most recent fundraiser on Nov. 3, 2019, netting over $20,000.

The new reality the family faces without their son is especially difficult during the Holidays.  Jill and Cam Morin discuss how they do it, how they cope with the new normal where their son is present only in spirit and not in person.  Childhood Cancer Talk Radio’s host Janet Demeter shares with the Morins her parallel confrontation with this reality at 7 years past the loss of her son to the same pediatric brain cancer, DIPG, and the unique challenges that losing a child brings to a family.  The accomplishments of the Morin family, and their positive attitude toward life and the legacy of their son are exceptional; their experience is shared by a large bereaved population in the US and reaching out for help is encouraged in times of need for emotional support.

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No Time To Lose: Pediatric Brain Cancer and the DIPG Fast-Track with Lisa and Jace Ward

"While we wait," declared Jace Ward from Wamego Kansas, to an NIH Symposium on genomic data sharing in September, 2019, "DIPG won't wait! It won't wait to take my mobility, my sight, my speech and my life..." With an extraordinary opportunity to shine a light on one of the darkest realms of pediatric oncology, Jace Ward, a young law student of 20 years, backed by his family takes on the burden of raising crucial awareness to the urgent, life/death struggle facing most all children diagnosed with diffuse intrinsic pontine glioma, the 2nd most common pediatric brain cancer. 

Jace takes us through this journey with pediatric brain cancer, the leading disease-related cause of death in children in the USA, in real-time; his mother Lisa shares the reality with which families are invariably confronted, mostly in obscurity. The most promising treatments for DIPG are currently funded by parent-led foundations and for which participation is exceedingly difficult to qualify. We learn about Jace's fight for ONC201 to be available to more children facing DIPG and midline glioma, and the campaign for a hearing with the Health Subcommittee of Energy and Commerce, to bring attention to this issue of urgency to our lawmakers in US Congress. 

 

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Oncoheroes: Advancing New Therapies for Childhood Cancer

Ricardo Garcia, CEO, Cesare Spadoni, COO, and Jonathan Agin, Head of Patient Advocacy for Oncoheroes Biosciences join us to discuss this relatively new company, founded in 2017, and it's unique and thoughtful approach to childhood cancer research. The families of each of the three gentlemen have each been affected directly by childhood cancer and the lack of adequate treatments developed for children.

Oncoheroes Biosciences was formed, in fact, to confront the challenges of the current medical research system to addressing the needs of children in a comprehensive manner. First, their focus is to bring new treatments for children, specifically to the marketplace; second, research into subtypes is prioritized according to prevalence and mortality rate; third, they offer unique philanthropic opportunities of partnership and return on investment for non-profit and for-profit organizations.

Learn about their recent success in signing an agreement with the pharmaceutical company Boehringer Ingleheim International for exclusive rights to develop the drug Volasertib. A drug originally developed for adult leukemia, Volasertib shows great promise in treating a number of childhood cancers, and is currently being developed to treat rhabdomyosarcoma.

 

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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. 

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Recent Shows
Title Date
Fight for Owen - Find A Cure, from South Africa
10-22-2020
The Rare Cancer Awareness, Research, and Treatment Act of 2020
10-15-2020
Juliette's Journey of Healing and Hope
10-08-2020
What's In A Day
10-01-2020
Why We Advocate, September 2020
09-10-2020
The Fight Like Emilie Foundation, with Trey Gibson
08-27-2020
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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.