Childhood Cancer Talk Radio Podcasts

Clayton Zook shares the story of his beautiful daughter Kirah, their journey with CMMRD, childhood cancer, and her legacy of music. Hear their story in simple, personable conversation, of love, honesty, and new commitment to life and learning, and valuing the heart's calling above all else. Spoiler alert! You'll hear the first release of Detroit's shining star, Kirah's song, "Sway," at the end of...

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...

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...

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 fami...

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,...

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 diagno...

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 chil...

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...

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 wit...

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 inve...

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 NI...

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 indi...

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...

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 Histor...

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 c...

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 Sa...

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 educatio...

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 a...

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...

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.

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...

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...

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-ins...

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 unpreceden...

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 devel...