Relay for Jack: Local Communities come together in support of National DIPG Awareness Week

For immediate release Relay for Jack: Local Communities come together in support of National DIPG Awareness Week May 24, 2016, Santa Clarita, CA—HRes586 was introduced to the House of Representatives Energy and Commerce Committee on January 13, 2016, by Congressman Steve Knight (R-CA-25) the day after the Moonshot Initiative was…

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Letter to President Obama

To President Barack Obama:                                                                                       Thursday May 5, 2016 I had the pleasure of meeting with Fae Jencks in the Office of Science and Technology this last Tuesday regarding an Awareness Resolution currently in the House of Representatives, HRes586, designating the 4th week of May to be National DIPG Awareness Week. …

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What if?

Childhood Cancer Advocacy 101 What if it were your child?  God help you…you’d discover very quickly that the medical research system doesn’t consider your child’s life investment-worthy, that no therapies have been developed for this disease for decades, and that urgency of need and potential years of life lost are…

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200 Mile Activist Run for HRes586 Makes History for DIPG, Childhood Cancer Awareness, and the State of California

For Immediate Release pdf. version April 19, 2016 Santa Clarita, CA—Ultra-distance runner and activist for children with cancer Everett Smith of Redlands, CA and Janet Demeter of Jack’s Angels in Agua Dulce, CA team up to promote “Action Days” for HRes586 in support of children currently afflicted with DIPG and…

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“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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