News

No Time to Lose: Advocacy Group Makes Congressional Hearing Request for Jace Ward, Diagnosed with the Deadliest Pediatric Cancer.

Thursday, Dec. 12, 2019, Santa Clarita, CA–Today a 2nd Hearing Request Letter was sent by the DIPG Advocacy Group to the Energy and Commerce Committee in US Congress for Jace Ward, a 20 year-old pre-law student from Wamego KS, diagnosed on May 17 of 2019 with DIPG, notorious for its less than 1% long-term survival rate.  Ironically, this is the …

What is an H. Res. bill?

Simple House Resolutions (designated H. Res. __) only need a vote in the House of Representatives to pass; they do not allocate funds or need a signature from the President as they are not laws, per se, and they are non-political. They are also referred to as a “Sense Of” Resolution as they embody a common feeling or sense of …

Cures 2.0 Call to Action

Five years ago, we initiated a “Call to Action”, that included a nationwide request of patients and their families to join us in an effort called “21st Century Cures”. Our combined efforts led to the enactment of the 21st Century Cures Act in 2016. Today, the 21st Century Cures Act is helping to advance medical research and foster a new …

Special Delivery…

BethAnn Telford, an endurance athlete and brain cancer survivor, advocate for brain cancer patients–especially children, made a special delivery for the DIPG Advocacy Group this past week on Capitol Hill. A letter to the leadership of the Energy and Commerce Committee in the House of Representatives, the Speaker of the House, and Committee Staff was first drafted on October 18th …

To Members of the Childhood Cancer Caucus and House Leadership in Matters Affecting America’s Children

Re:  H. Res. 114, the DIPG Awareness Resolution, #Moonshot4Kids Sept. 7, 2019 To the Congressional Caucus for Childhood Cancer and all Members of elevated influence in the House of Representatives concerning America’s children: Thank you for considering this letter and the H. Res. 114  information being distributed among all members of the House of Representatives.  Because of your position of …

DIPG as Ambassador to Public for Childhood Cancer

from our packet to Congress–use it! In support of H. Res. 114…why? Here: The Public needs powerful examples attain sufficient awareness to pressure Congress. If we want childhood cancer legislation like STAR and RACE to truly be effective, to have its allocations approved, to build upon and allow greater development and support for pediatric research, the Public needs to put pressure …

To the Leadership of the House of Representatives H. Res. 114, the DIPG Awareness Resolution

Sept. 3, 2019 To the Honorable Speaker Pelosi (CA-14) of the House of Representatives​, to House Majority Leader Hoyer(MD-5), House Minority Leader McCarthy(CA-23), and to the Honorable House Majority and Minority Whips, James Clyburn(SC-6) and Steve Scalise(LA-1): To Chairman Pallone(NJ-6) and Ranking Member Walden (OR-2) of the House Energy and Commerce Committee, and Chairman Eshoo(D-18) and Ranking Member Burgess (TX-26) …

“Moonshot4Kids” at Monje Lab: DIPG Families Advocate for Increased Pediatric Cancer Research Funds

From this last May 17; we’ve come so far since the National DIPG Awareness Resolution was first introduced in 2016. Let’s get it over the finish line. June 7, 2019 | Mia Brozovich NackeCOMMUNITY OUTREACH, EVENTS, PEDIATRICS, RESEARCH AND INNOVATION. Families who have lost children to Diffuse Intrinsic Pontine Glioma, a fatal brain tumor with a median survival of 9-10 months, met with Stanford pediatric …