Every Voice Matters: The Power of Initiative in Advocacy

Wendy and Dean Fachon of Rhode Island join us to talk about state legislation, national resolutions and the legacy of their son Neil, making a strong case for “Right to Try.” Paul Miller from Colorado shares about the power of social media and the magic of belief, with 2 successful…

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DIPG Advocacy Group Letter to House Leadership

re:  H. Res. 69 House Vote before the end of Session II, 115th Congress                                       November 28, 2018 To: The Honorable Speaker of the House of Representatives Paul Ryan (WI-1), The Honorable Majority Leader Kevin McCarthy, Minority Leader Nancy Pelosi (CA-12); The Honorable Chairman of the Energy…

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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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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…

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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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Congressman Knight Champions Awareness Legislation for Children with Cancer

January 30, 2018, Santa Clarita, CA–One year ago today, Congressman Steve Knight (R-CA-25) introduced with Congresswoman Jackie Speier (D-CA-14) H.Res.69, the National DIPG Awareness Resolution to the House Energy and Commerce Committee.  The Resolution persists today, amid an intensive political landscape in 2018, for children with the deadliest pediatric brain…

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Congressman Knight Champions Awareness Legislation for Forgotten Children

January 23, 2018, Santa Clarita, CA–Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, for children with the deadliest pediatric brain cancer, DIPG:  diffuse intrinsic pontine glioma.  Not only does the bill call for an Awareness Day for these children and their families, May 17, it…

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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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