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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Global Childhood Cancer Advocate Gerry Tye in Sydney, Australia

Gerry Tye joins us from Sydney Australia to discuss the changes in the childhood cancer community over the past six years. A father of three boys, Gerry’s middle child Talin (age 5) was diagnosed with brain cancer in 2012, passing away shortly thereafter. Beginning in relative obscurity, Gerry’s advocacy for…

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Sunshine Coast Daily: The Last Hope for Dying Children

by Jane Hansen, January 21, 2018, an Australian Outlet https://www.sunshinecoastdaily.com.au/news/last-hope-dying-children/3315273/ IT’S the last chance hospital for dying children – a Mexican treatment centre that ­refuses to publish results or co-operate with the medical community. But, when your daughter has a fatal strain of brain cancer, you will do anything –…

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Kids First 2.0 with Ellyn Miller

Ellyn Miller joins us to discuss the Gabriella Miller Kids First Research Act, originally signed into law by President Obama in 2014. The original bill ensured that a special fund was created at National Institutes of Health for research into pediatric disease, which historically receives inadequate funding for research. We’re…

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Vesselon: Addressing the Challenges of Brain Cancer with Non-Invasive Technology

Rhodemann Li and Clayton Larsen, co-founders of Vesselon describe the unique blending of two technologies into one platform effectively solving the problem of the blood-brain barrier in treating brain cancer.  Using ultrasound and micro-bubbles, the future of pediatric brain cancer treatment could include a simple hand-held device enhancing the delivery of…

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