“Action Days” coming for Kids on Cancer’s Death Row: HRes586 “Chad and Jack’s DIPG Resolution”

After Jack died I learned that DIPG is responsible for most of the brain tumor deaths in children, so, how many have to die until their lives are worth saving? April 2, 2016 Santa Clarita, CA—The significant rise in awareness for the devastating lack of funding for research into causes …

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New Funding Opportunity in the Kids First Program

Message from NIH to subscriber transmitted by Janet Demeter (JAF) 3-28-2016 Dear Colleague, The Common Fund’s Gabriella Miller Kids First Pediatric Research (https://commonfund.nih.gov/KidsFirst) program (Kids First) is developing a data resource for the pediatric research community of well-curated clinical and genetic sequence data that will allow scientists to identify genetic …

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Moonshot

Chad and Jack’s DIPG Resolution and Childhood Cancer; is it relevant? The Resolution is named for Chad Carr of Michigan and Jack Demeter of California, both beloved and perished to DIPG. …this is about making a decision, a decision to not look away, but to acknowledge the relevance of life. …

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Childhood Cancer Awareness; why won’t they “go GOLD”?

In Loving Memory of Evylah d. 10.10.15 September was Childhood Cancer Awareness Month, but for some reason the President refused to flood-light the White House gold, even for a day, as it goes pink for breast cancer, rainbow for same-sex marriage, and the list goes on.  To add insult to injury, …

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Letter to the President

pdf version   letter sent to Congressional leaders President Barack Obama The White House 1600 Pennsylvania Avenue NW Washington DC, 20500 Tuesday, September 15, 2015 Dear President Obama, I cannot thank you enough for your kind replies to my previous letters about DIPG children and the desire for more effective action …

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“‘Just Say It!’–DIPG–The Run for a National Day” heralds the fight to end obscurity for DIPG in the United States.

DIPG parents must watch and wait in terror as their child disappears from this world knowing that to our current system they don’t matter. How many more of them have to die before they are a priority? This is why I’m running for a National Day. On PRWeb For Immediate …

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“Just Say It!”—the Run for a National Day for DIPG, run #2 of 4 is this Sunday in Los Angeles.

Most of the cases on the news this year of terminally diagnosed children have been DIPG, but no one knows it… Wednesday, September 2, 2015 Santa Clarita, CA—Event #2, the LA Beach Run of the “Just Say It!”—DIPG, the Run for a National Day begins this Sunday Sept. 6 at …

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Letter to Governor Brown, updated

This has been re-submitted to California Governor Jerry Brown –“Thank you Governor Brown, for your consideration and time, which I know is limited to very urgent matters. I must emphasize that my reaching out to you in full knowledge of this is due to the fact that I am aware of …

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Local Mom’s National Campaign for DIPG Awareness

“Just Say It!”—A Local Mom’s National Campaign for DIPG Awareness   August 17, 2015, Santa Clarita, CA—Janet Demeter is running on the heels of good fortune, the local leadership of our very own CA State Assemblyman Scott Wilk who, touched by the story of Jacks Angels Foundation, authored ACR151 which …

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