NEWS/blog

  • 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 2nd most common pediatric brain cancer, has become a national phenomenon for childhood cancer awareness.  The first DIPG awareness resolution in 2014, ACR151, was inspired …
  • 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 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 …
  • May 17 Marks an Acton-Agua Dulce Tradition for Powderpuff and Brain Cancer -   May 2, 2018, Agua Dulce CA--Vasquez High School students in Acton are preparing for their 6th Annual Powderpuff Football Game benefiting Jack’s Angels, a local charity dedicated to awareness and research for DIPG, the deadliest pediatric brain cancer, and advocacy for children with cancer. The Powderpuff Game began in 2013 with then Senior students Oren Dye and Brandi Beltrane, and newly appointed Principal Ty Devoe of Vasquez High School, were inspired to create an …
  • “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 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 …
  • Four Pennies Supports Project Open DIPG - Open DIPG (Diffuse Intrinsic Pontine Glioma) Research Project This research project is all about collaboration, and is the first of its kind in many ways. “Open DIPG (diffuse intrinsic pontine glioma)” is the first translational, multi-institutional study that will address an unmet need for treating pediatric Central Nervous System (CNS) tumors.   The overall objective is to utilize the strength of the many institutions involved in the two consortia involved, the Pacific Pediatric Neuro-Oncology Consortium …
  • 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. 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 …
  • 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 the offices of Congress in support of H.Res.69, the DIPG Awareness Resolution. The Resolution, jointly introduced by Reps Steve Knight (R-CA-25) and Jackie Speier (D-CA-14) …
  • 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 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 …
  • 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 for this year, and retroactively--that May 17th be National DIPG Awareness Day.  The importance of the Resolution is with the raising of awareness to the …
  • 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 the median survival time is 9 months post diagnosis.  Kaisey, although diagnosed with a terminal brain cancer, has hope for longer survival today because of …

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