DIPG Advocacy Group and the undersigned are asking for your attention to H. Res. 114, the DIPG Awareness Resolution, and thus to the leading disease-related cause of childhood mortality in the United States: pediatric brain cancer. After 4 years have passed and a third introduction, little has changed for these children. By the end of this session of Congress and …
Tag: H. Res. 114
My NBTS Letter
May 4, 2020 My Letter to NBTS for “Head to the Hill” Virtual Event Dear Senators Feinstein, Harris, and to all California Reps: I am writing today as a constituent and volunteer advocate with the National Brain Tumor Society. I, like 400 other parents annually, lost my child to the 2nd most common, and the deadliest, pediatric brain cancer called …
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 …
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 …
Real-Time May Day on Capitol Hill: DIPG Advocacy Group’s Relentless Fight for Children with Brain Cancer In a Culture of Indifference
It’s not such a rare cancer in children; it’s the 2nd most common variety of pediatric brain cancer, and God help you if it crosses your path. WASHINGTON (PRWEB) MAY 01, 2019 Imagine hearing, after the brief onset of some unusual symptoms, that your child is going to die, that there are no viable treatments and you must take him or …
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 position on the Committee, and consideration of support for this …