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 …
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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 …
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 …
Wear the Shirt!
Coming soon! Have some designs for you to choose from…
Rep. Brian Fitzpatrick (PA-1) on the Importance of Defining our Funding for Pediatric Research:
Regarding Vague Reference Objections to Awareness Days
‘We don’t do those anymore…’ Now what? What you need to know as an advocate about simple House Resolutions. Since the first iteration of the DIPG Awareness Resolution (114th Congress H. Res. 586 introduced 1/13/2016), we have occasionally experienced the disheartening “push-back” from certain legislative offices regarding an assumed abolishment of awareness days, which is not an altogether correct assumption. …