To the Members of the Energy and Commerce Committee, and Sub-Committee on Health

The missing ingredient is greater public awareness to the chronic lack of adequate research funding for pediatric cancers, most of which are deadly, marginalized as rare, and devoid of solutions.   Thank you for considering this and the attached information being distributed among all members of the House of Representatives.  Your…

Continue reading

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…

Continue reading

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…

Continue reading

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…

Continue reading

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,…

Continue reading

Today! 6-11 #AngelsStadium #KatherineTheBrave #HRes586

June 11, 2016 Los Angeles CA–This Afternoon the Angel Runner hits the pavement of Anaheim to arrive at Angel’s Stadium at approximately 3pm.  She’ll circle three times in memory of Katie King, aka Katherine the Brave, a little 7-yr old girl from Placentia who succumbed to DIPG on 6/6/2016 around 7:30pm in her…

Continue reading