News

A Unique and Powerful Challenge, and Opportunity

H. Res. 404 Press Summary (general description/brief history and background) How any US citizen can help H. Res. 404 Use Hashtags: #moonshot4kids #kidslivesmatter #passHRES404 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.  By providing facts about childhood brain cancer, the DIPG …

Now Is The Time: “Moonshot4Kids” Congressional and White House OSTP Briefing Asserts Urgency for Childhood Brain Cancer

Now is the time for a Moonshot for Children. Michelle LeBeau CSO, Cancer Prevention Research Institute of Texas May 17 panel assembles to alert the Federal Government of the suffering and deaths of children with brain cancer, a leading killer of children in the USA. WASHINGTON, DC, USA, May 3, 2022/EINPresswire.com/ — DIPG Advocacy Group announces the Moonshot4Kids Congressional & OSTP Briefing …

If No One Knows, No One Cares:  #Moonshot4Kids Delivers Urgent Message to President Biden at the White House

At the White House Cancer Moonshot Announcement, a childhood cancer advocate gets a golden opportunity to share an urgent message with the President. This is the wake up call of #Moonshot4Kids: medical research investment into cures for children is one area where our priorities as Americans are completely upside-down.”— Janet Demeter LOS ANGELES, CA, USA, February 8, 2022/EINPresswire.com/ — Janet …

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 …

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 …