“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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Hike 4 Pennies: Uniting the Childhood Cancer Community

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.…

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Death Sentence for 300 Children Each Year in the United States Motivates DIPG Advocacy Group Trip to Washington DC

April 14, 2018 The current medical research system…is non-apologetically and systematically divested of concern. April 12, 2018, Santa Clarita, CA–The DIPG Advocacy Group, organized by childhood cancer advocate Janet Demeter of Agua Dulce, CA is preparing a trip to Washington DC for the week of April 16, 2018 to visit…

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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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DIPG Awareness Day—A National Movement

I’m re-posting this as, for some reason, the blog page isn’t allowing access to posts other than the one page…sorry, I’m not a tech genius and I don’t have a volunteer working on organizing our site. Original date was July 24, 2017. (H.Res.69 asks for a date henceforth, not just…

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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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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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Congressman Knight Champions Awareness Legislation for Children with Cancer

January 30, 2018, Santa Clarita, CA–One year ago today, Congressman Steve Knight (R-CA-25) introduced with Congresswoman Jackie Speier (D-CA-14) H.Res.69, the National DIPG Awareness Resolution to the House Energy and Commerce Committee.  The Resolution persists today, amid an intensive political landscape in 2018, for children with the deadliest pediatric brain…

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Congressman Knight Champions Awareness Legislation for Forgotten Children

January 23, 2018, Santa Clarita, CA–Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, for children with the deadliest pediatric brain cancer, DIPG:  diffuse intrinsic pontine glioma.  Not only does the bill call for an Awareness Day for these children and their families, May 17, it…

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