DIPG Advocacy Group Policy in Grassroots Advocacy Work

Awareness Campaign Agenda for H. Res. 404 and legislation for childhood cancer/disease. DIPG Advocacy Group is not a legally incorporated entity, but a coalition or alliance (unofficial corporate body) of childhood cancer organizations and individual advocates supporting the National DIPG Awareness Resolution, which has had 3 Senate and 4 House of Representatives introductions on its pathway to success.  It is …

From Bexion Pharmaceuticals, Oct. 4, 2021

04 Oct 2021Innovative efforts by both academia and industry offer renewed hope for the treatment of a rare pediatric brain tumor*, says GlobalData *Note from website management: DIPG is the 2nd most common brain tumor in children, and is considered a rare disease. Original posted in Pharma Diffuse intrinsic pontine glioma (DIPG) is an extremely rare pediatric brain tumor with a …

Bipartisan Cancer Patient Equity Act (CPEA 2021) H.R.5377 Introduced by Rep. Butterfield (D-NC-01) and Rep. Bilirakis (R-FL-12)

Advocacy Campaign Success of SHEPHERD Foundation on Behalf of Rare Cancer Patients Cision Pressier NEWS PROVIDED BY SHEPHERD Foundation  Sep 28, 2021, 14:32 ET WASHINGTON, Sept. 28, 2021 /PRNewswire/ — Congressmen G. K. Butterfield (D-NC-01) and Gus Bilirakis (R-FL-12), the driving political forces behind the realization of the Cancer Patient Equity Act (CPEA 2021), have been instrumental champions of the SHEPHERD Foundation’s “Rare …

Washington: Vivian Rose Weaver Chapter, ChadTough Defeat DIPG Foundation

VIVIAN ROSE WEAVER Written by Katie Weaver, Vivian Rose’s Mom On the evening of Monday, January 29, 2018, our three-and-a-half year old daughter Vivian was playing outdoors with her father when she complained of a headache. Recalling that she had complained of a minor headache on several recent occasions, her father, a physician, sat Vivian on the lawn and examined …

October Letter to Congress

Link to pdf includes endorsements page and resolution text Seeking Member Support for the Recognition of Children Fighting Brain Cancer: H. Res. 404, The National DIPG Awareness Resolution Oct. 1, 2021 To the Honorable Members of the United States House of Representatives, and Staff: Thank you for considering this otherwise obscured population and issue amid other pressing matters on Capitol …

July 7 Congressional Office Meetings

These districts today were previously supporters of the Resolution during the last session of Congress.  Times of meeting are represented in Eastern Daylight Time (EDT). 10:00am:  Office of Congresswoman Michelle Fischbach (MN-07) with Sr. Legislative Assistant Will Smethers (previously represented by Congressman Peter Collins) 11:00am:  Office of Congresswoman Vicki Hartzler (MO-4) with Colleen Castle, Legislative Assistant 15:00h (3pm):  Office of …