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…
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…
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…
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…
Give them back their childhood: Funding plea for pioneering treatment of rare brain tumour that no child has survived Most die within months of diagnosis of intrinsic pontine glioma (DIPG) Innovative treatment targets tumour directly rather than intravenously New technique also means there is no risk of side effects like hair…
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.…
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,…
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…
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…
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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