Written for the greater purpose of raising awareness for DIPG, and accomplishing the goals to further this cause.
What’s in a day? Everything. For us, absolutely everything. Madam Speaker, After 5 years of advocating for the National DIPG Awareness Resolution I’ve discovered that for the third introduction in 2019, the lead sponsor never intended to fight for this bill, or these kids, to be considered with respect to…
Please visit the Alliance for Childhood Cancer to see the full plate of legislative activity in which they engage as advocates for the childhood cancer community as a whole. April 15, 2018 pdf version The Honorable Frank Pallone, Jr. Chairman, Committee on Energy & Commerce 2107 Rayburn House Office Building Washington,…
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…
January 4, 2019, Agua Dulce, CA–I sent this note to Ryan Gosling on Facebook, hoping that somehow it would reach him: Hi Ryan, hoping this is actually your page. I just wanted you to know about an important awareness movement for the childhood cancer community, specifically for brainstem glioma–DIPG, the…
re: H. Res. 69 House Vote before the end of Session II, 115th Congress November 28, 2018 To: The Honorable Speaker of the House of Representatives Paul Ryan (WI-1), The Honorable Majority Leader Kevin McCarthy, Minority Leader Nancy Pelosi (CA-12); The Honorable Chairman of the Energy…
On Day 23 of Brain Tumor Awareness Month in 2018, it seemed apropos to share this appeal: The Honorable Donald J. Trump President of the United States The White House Office of Proclamations 1600 Pennsylvania Avenue NW Washington, DC 20500 Dear President Trump, On behalf of the DIPG…
There is a specialized killer on the loose taking the lives of 350 children a year in our country with certain regularity; I believe we’d be using whatever resources necessary to track him down if he were a person. September 6, 2016 Dear President Obama, I’ve written to you a…
To President Barack Obama: Thursday May 5, 2016 I had the pleasure of meeting with Fae Jencks in the Office of Science and Technology this last Tuesday regarding an Awareness Resolution currently in the House of Representatives, HRes586, designating the 4th week of May to be National DIPG Awareness Week. …
Chad and Jack’s DIPG Resolution and Childhood Cancer; is it relevant? The Resolution is named for Chad Carr of Michigan and Jack Demeter of California, both beloved and perished to DIPG. …this is about making a decision, a decision to not look away, but to acknowledge the relevance of life.…
pdf version letter sent to Congressional leaders President Barack Obama The White House 1600 Pennsylvania Avenue NW Washington DC, 20500 Tuesday, September 15, 2015 Dear President Obama, I cannot thank you enough for your kind replies to my previous letters about DIPG children and the desire for more effective action…
