News

To Congress, from Colleagues, Experts, Philanthropists, Parents, Patients

from Congressional Briefing 2/13/2020, 11am, 2168 Rayburn H.O.B.   DIPG, Pediatric Brain Cancer, and the Importance of H. Res. 114 Congresswoman Jackie Speier (D-CA-14) “DIPG is a death sentence for children today, but it doesn’t have to be; this resolution is an important first step in securing the resources needed to develop better treatment options and find a cure.”* Dr. Sabine …

To the Childhood Cancer Community

Feb. 29, 2020 To the Childhood Cancer Community: We would like to share with you an historic event for DIPG, pediatric brain cancer, and childhood cancer in general which took place just 2 weeks ago on Feb. 13, 2020 in Washington DC.  Despite advances in leukemia and progress with childhood cancer survival rates in recent years, most exclusively pediatric cancers …

Resolution Information

What is the meaning of H. Res. 114; what does it really do? H. Res. 114 raises awareness to the lack of adequate research funding into cures for pediatric cancer, and the statistics around pediatric brain cancer, CNS tumors being responsible for more childhood deaths than any other disease in the US. H. Res. 114 suggests that the years of …

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 …