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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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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H.Res.69: Crucial Awareness Supports Greater Research from the Tragic Example of DIPG

Dr. Michelle Monje-Deissiroth of Stanford University and Dr. Adam Green of University of Colorado, Denver, join us to discuss the breadth of their research as pediatric neuro-oncologists, specifically regarding DIPG, diffuse intrinsic pontine glioma. They discuss how they were inspired to study this particular disease as a focal point for…

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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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CCTR Presents, “Realities of DIPG”

Jaime King, mother to Katie(7), aka Katherine the Brave, and Mark Landis, father to Parker (5), describe the realities faced by parents of DIPG-diagnosed children today. DIPG, diffuse intrinsic pontine glioma, is an invariably terminal pediatric brain tumor with no change in treatment protocol for over 40 years. Parents discover…

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