Childhood Cancer Talk Radio Podcasts

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. It's easy to join; visit bidencancer.org/events to register today!

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.

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.

Kortney Rose Foundation is preparing for it's 13th annual "Kortney's Challenge" 2-mi run/walk event benefiting pediatric brain cancer research, on August 5 2018; visit www.thekortneyrosefoundation.org for more information about this event and the evolving research project for DIPG.

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.

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.

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, 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.

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. .

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.

The four pennies concept is well-known to most in the childhood cancer community, with its reference to the 4% of our national budget for cancer research that is directly purposed for pediatric cancer research annually. Coincidentally, as Brain Tumor Awareness Month approaches, we are reminded that brain cancer is the leading cause of death in children with cancer, and DIPG, the undisputed juggernaut of pediatric brain cancer, diffuse intrinsic pontine glioma, is responsible for the majority of brain tumor deaths annually in the United States.

Swifty Foundation, the Pediatric Brain Tumor Foundation, Dragonmaster Foundation, and the Courtney Rose Foundation are teaming up to raise funds with 4 pennies for the Project Open DIPG, a ground-breaking collaborative project for research in pediatric neuro-oncology, and partnership between PNOC (Pacific Pediatric Neuro-Oncology Consortium) and CBTTC(Children’s Brain Tumor Tissue Consortium) research groups. There has been no progress in standard treatment or prognosis for the terminal disease in over 50 years.

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.”

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.

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, for which the median survival time is 9 months. 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.