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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Jodi Jacobs and the “Support DIPG Awareness” Petition

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…

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“The Heart of Luminous”, by Luna Zin: Debut of an Author

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…

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Chase Jones and the Biden Cancer Initiative

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…

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Appeal for a Presidential Proclamation for the Deadliest Pediatric Brain Cancer

On Day 23 of Brain Tumor Awareness Month in 2018, it seemed apropos to share this appeal: The Honorable Donald J. Trump President of the United States The White House Office of Proclamations 1600 Pennsylvania Avenue NW Washington, DC 20500   Dear President Trump,   On behalf of the DIPG…

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May 17 is DIPG Awareness Day in California; H.Res.69 Awaits a U.S. House Vote

Most people simply don’t know that our children are not a priority, unless pediatric cancer directly impacts them or someone very close to them. May 14, Santa Clarita, CA–what began in 2014 in California as the first State Awareness Resolution for DIPG, diffuse intrinsic pontine glioma, the deadliest and the…

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A Legacy of Love and Hope: Julianna Sayler Foundation

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, and 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…

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“Lighten Our Darkness”: Two Moms Advocate for Others from Life’s Most Tragic Loss

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…

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What We Do when there are NO OPTIONS, with Melany Knott

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, diffuse intrinsic pontine glioma, for which…

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Zoe’s Butterfly Foundation, Part I

Melissa Castango joins us to share the story of her daughter Zoe, diagnosis with brain cancer and the beginnings of her journey with Zoe’s Butterfly Foundation in Milford, CT. The realities of a terminal diagnosis for the family including changes in friendships, family structure, and the desire to honor and…

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