#PeytonManningMeetJackson!

Jackson is a boy from Colorado fighting a devastating foe: DSRCT. Desmoplastic Small Round Cell Tumor (sarcoma) is a frequently misdiagnosed, rare pediatric cancer with only 200 known cases in the United States, and a poor prognosis. His father, Jason Frank, candidly discusses the monumental challenges confronting his family, and…

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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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Jodi Jacobs and the “Support DIPG Awareness” Petition

What is it like when there is literally nothing they can do, when your child is ok one day, but after the next might never walk again? Jodi Jacobs tells it like it is for DIPG families, discussing what happened to her 7 year old daughter, Cheyanne.  DIPG, often labeled…

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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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FACTOR 2018: MIB Agents Osteosarcoma Mission Full Speed Ahead

Ann Graham, CEO of MIB Agents–Make-It-Better-Agents–and osteosarcoma survivor, joins us to discuss the great strides in improving outcomes for osteosarcoma patients which her organization accomplishes as they move forward. The FACTOR Conference began last year in 2017 and was enormously successful in bringing top oncologists, clinicians, patient families and advocates…

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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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Kids First 2.0 with Ellyn Miller

Ellyn Miller joins us to discuss the Gabriella Miller Kids First Research Act, originally signed into law by President Obama in 2014. The original bill ensured that a special fund was created at National Institutes of Health for research into pediatric disease, which historically receives inadequate funding for research. We’re…

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“My Dog Named Hope” Comforts Children and Supports Research

The new children’s book “My Dog Named Hope” is about a special girl, her amazing dog, and a family’s journey through childhood cancer. The story was based on a compilation of the experiences of many childhood cancer families by the author, Joe Dean during his time working for the US…

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