Reps Speier, Joyce Introduce Bipartisan Resolution to Fight Deadly Pediatric Cancer

Contact: DC – Tracy Manzer (202) 225-3531 (W) / (202) 538-0641 (C) tracy.manzer@mail.house.gov CA – Katrina Rill (650) 342-0300 (W) / (650) 208-7441 (C) katrina.rill@mail.house.gov Reps Speier, Joyce Introduce Bipartisan Resolution to Fight Deadly Pediatric Cancer Washington, DC –Today, Reps. Jackie Speier (D-San Francisco/San Mateo) and David P. Joyce (R-Cleveland),…

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Facebook Post to Ryan Gosling

January 4, 2019, Agua Dulce, CA–I sent this note to Ryan Gosling on Facebook, hoping that somehow it would reach him: Hi Ryan, hoping this is actually your page. I just wanted you to know about an important awareness movement for the childhood cancer community, specifically for brainstem glioma–DIPG, the…

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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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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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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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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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Taking it to the Hill: DIPG Advocacy Group promotes H.Res.69

December 5, 2017, Washington, D.C.–H.Res.69, the DIPG Awareness Resolution, is a simple House Resolution which raises awareness to the realities of diffuse intrinsic pontine glioma, perhaps the most deadly pediatric brain cancer.  It also raises awareness to general pediatric cancer and brain cancer statistics, the leading cause of death in…

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May 17 is DIPG Awareness Day—A National Movement

I discovered it was the 2nd most common pediatric brain tumor, and responsible for the majority of pediatric brain cancer deaths each year.  If brain cancer is the leading cause of death in kids with cancer, it’s hardly irrelevant, no matter how you define ‘rare’. May 14, 2017, Santa Clarita,…

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DIPG Across the Map

Jenny Mosier, Executive Director of the Michael Mosier Defeat DIPG Foundation joins us to discuss a 50-State Project for DIPG, calling for volunteers in as many states as possible to work for a gubernatorial or state legislature proclamation for May 17 2017 DIPG Awareness Day.  The 2017 National DIPG Awareness…

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4th Annual Santa Colorita Run Includes “Skip for Jack” Tribute to Children with the Deadliest Pediatric Brain Cancer, DIPG

For immediate release: 4th Annual Santa Colorita Run Includes “Skip for Jack” Tribute to Children with the Deadliest Pediatric Brain Cancer, DIPG February 18, 2017, Agua Dulce CA—The Santa Colorita 5k Fun-Run on February 25, 2017 at Castaic Lake Recreation Center in Castaic, CA, produced by the Santa Clarita Valley…

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