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."

"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. 

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.

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. 

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.

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.