The Difference of a Decade: A Conversation with Childhood Cancer Advocate Jonathan Agin

This edition of Childhood Cancer Talk Radio gives a personal look at the landscape of childhood cancer advocacy over recent years, between parents of children afflicted with brain cancer.  For this, I have the honor of sharing conversation and perspective with fellow advocate Jonathan Agin, whose participation in the childhood…

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Expanded Access Program Press Release from Oncoceutics

Oncoceutics Receives Foundation Grants to Establish an Expanded Access Program for ONC201 Philadelphia, PA (November 2, 2020) – Oncoceutics, a clinical-stage drug discovery and development company, announced today that it has received grants from Michael Mosier Defeat DIPG Foundation, Dragon Master Foundation and The ChadTough Foundation to fund an Expanded…

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“Mr. BLUNT, from the Committee on Appropriations, submitted the following R E P O R T…”

Excerpt taken from p. 90 – 91 of the REPORT DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATION BILL, 2020 Childhood Cancer Data Initiative.—The Committee strongly supports the budget request to focus $50,000,000 a year toward pediatric cancer research over the next 10 years. The…

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Thank you R-cosponsors; last chance for H. Res. 69, meeting request DIPG Advocacy Group, Dec. 3-5

(Letter was sent to:  Barbara Comstock (VA-10), William Hurd (TX-23), Lamar Smith(TX-21), John Duncan (TN-2), Ryan Costello(PA-6), Scott Perry (PA-4), Duncan Hunter (CA-50), Andy Barr (KY-6), Daniel Donovan (NY-11), Brian Fitzpatrick (PA-8), Chris Collins (NY-27), Evan Jenkins (WV-3), Lou Barletta (PA-11), Steve Stivers, (OH-15), David Joyce (OH-14), and cc’d to…

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DIPG Awareness Day—A National Movement

I’m re-posting this as, for some reason, the blog page isn’t allowing access to posts other than the one page…sorry, I’m not a tech genius and I don’t have a volunteer working on organizing our site. Original date was July 24, 2017. (H.Res.69 asks for a date henceforth, not just…

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May 17 is DIPG Awareness Day—A National Movement

I discovered it was the 2nd most common pediatric brain tumor, and responsible for the majority of pediatric brain cancer deaths each year.  If brain cancer is the leading cause of death in kids with cancer, it’s hardly irrelevant, no matter how you define ‘rare’. May 14, 2017, Santa Clarita,…

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National Cancer Institute’s Office of Advocacy Relations: A Conversation with Patrick Mahoney

Childhood Cancer Talk Radio interviews Patrick Mahoney from the Office of Advocacy Relations (OAR) at NCI.  The March 16 discussion included a brief history of the National Cancer Institute, it’s role as a scientific research institution as well as resource of support and direction for millions afflicted with cancer.  “We…

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Virtual Running Event Benefits Pediatric Cancer Research and offers Global Support for the 2017 National DIPG Awareness Resolution

From anywhere in the world, all are welcome to participate in the “Virtual Relay for Jack” event, supporting a research project for DIPG, the leading cause of death in children with brain cancer.  The event also provides a rallying point for the groundbreaking National DIPG Awareness Resolution which addresses the…

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SOS American Children Dying Daily #CureDIPG

November 13, 2016 Re:  SOS; American Children Dying Daily #CureDIPG #JacksAngels DIPG Report                Letter to President Obama 9/6/2016   H.Res.586 To the Honorable President-Elect Trump and his Staff: I write to you with great hope in my heart that indeed the change you represent…

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Letter to the President

There is a specialized killer on the loose taking the lives of 350 children a year in our country with certain regularity; I believe we’d be using whatever resources necessary to track him down if he were a person. September 6, 2016 Dear President Obama, I’ve written to you a…

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