News

A Unique and Powerful Challenge, and Opportunity

H. Res. 404 Press Summary (general description/brief history and background) With DIPG, we have an important opportunity to raise awareness for childhood and rare cancers and the neglect of those most needy of cures for research funding.  The DIPG Awareness Resolution confronts the fact that our medical research investment culture follows corporate values first rather than our humanitarian values of …

DIPG Advocacy Group Policy in Grassroots Advocacy Work

Legislation AGENDA Fall 2021 (Description follows below) Primary:  Res. 404, a Resolution. press summary Our Letter to Congress with Resolution TEXT H. Res. 404 The DIPG Awareness Resolution is meant to be a  “door-opener” to facilitate the expedition of urgently needed legislation which is often met with unfortunate resistance and compromise for this vulnerable population of children with cancer.  As such, in …

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 …