Show Info

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."

 

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
Recent Shows
Title Date
Childhood Cancer Caucus Summit 10th Anniversary Special Edition
09-26-2019
"Fry and Die, AML!"-with Julie Guillot and Michael Copley
09-04-2019
The House that Hope Built in Zurich, with Philip Manduca
08-29-2019
Move the Mountain with the 2019 Hood-to-Coast Relay
08-01-2019
Kier's Kidz and Songs of Love
07-25-2019
The Pepper-Neely Act of 1946 and the Fitzgerald Report of 1953, with Randy Hinton
07-18-2019
View All Podcasts
Subscribe to Podcast feed
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+