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…

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A Family Affair: Kendal Brown and her Family in South Carolina

Sandra Brown joins us on Childhood Cancer Talk Radio from Dillon, South Carolina to share the story of her beautiful, 10 year old granddaughter who is fighting brain cancer like a champion. Involved in an ongoing clinical trial for DIPG, Kendal was an honor student this past year, and is…

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From Advocacy to Activism: DIPG Advocacy Group Salutes Cannonballs Across America

May 2019 has witnessed important advances in pediatric brain cancer awareness, advocacy, and the fulfillment of a life-time dream by a dedicated brother and his friends for Kayne Finley of Ormond Beach FL, deceased 18 months ago to DIPG. DIPG is the second most common but deadliest pediatric brain cancer,…

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To the Members of the Energy and Commerce Committee, and Sub-Committee on Health

The missing ingredient is greater public awareness to the chronic lack of adequate research funding for pediatric cancers, most of which are deadly, marginalized as rare, and devoid of solutions.   Thank you for considering this and the attached information being distributed among all members of the House of Representatives.  Your…

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Bill Kohler: When Suddenly There’s No Time.

From a State Tax Measure bringing needed funds to pediatric cancer research, to leading in the country-wide movement for a DIPG Awareness Day, Pennsylvania is leading in authentic grassroots advocacy for children with cancer and their families. Bill Kohler is a highly respected and decorated veteran of the Iraq war,…

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Urgency of Need: Awareness and Research for Pediatric Brain Cancer, with Steven Healey

Steven Healey shares the inspiration behind the foundation, his beautiful, forever-5 year old daughter Brooke who’s life lasted just eight months post diagnosis of DIPG, a deadly pediatric brain cancer. Healey describes the harrowing experience as a parent, but also about a new-found community of families dedicated to funding research…

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DIPG Advocacy Group Letter to House Leadership

re:  H. Res. 69 House Vote before the end of Session II, 115th Congress                                       November 28, 2018 To: The Honorable Speaker of the House of Representatives Paul Ryan (WI-1), The Honorable Majority Leader Kevin McCarthy, Minority Leader Nancy Pelosi (CA-12); The Honorable Chairman of the Energy…

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What If Your Child Lives When Expected to Die?

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…

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Oncoceutics: Real-Time Solutions for Cancer Treatment

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…

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STRAIGHT TALK with the Fachons about Neil’s Incredible DIPG Journey

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…

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