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 leadership, your consideration of support for this Resolution, now in its third iteration, is crucial to its recognition and movement out of the Energy and Commerce Committee.  Those of us who advocate for children with brain cancer, the leading cause of death in children with cancer, and DIPG, the deadliest of all, we are speaking for those parents who cannot; we speak for our children who will never have the opportunity, because they no longer walk the earth with us, and those fighting to stay alive today.

Despite the long-awaited passage of the STAR Act, RACE, Creating Hope, and Gabriella Miller Kids First, all for which members of DIPG Advocacy Group have advocated strongly, the fight for allocations for these laws and their re-authorizations continues with anxious uncertainty.   The auspicious SOTU announcement for the Childhood Cancer Initiative gives absolutely no guarantees amid the proposed budget cuts to the NCI. The STAR Act was signed into law 10 long years after that of its precursor which failed; the element wherein the GAO would investigate and identify the main challenges within NCI to allocating sufficient research funds for pediatrics has been modified beyond recognition, and the same $30M per year amount for the STAR programs, has no greater probability of actually happening.

Most importantly, the experiential status quo has not changed for families.  Sadly, pediatric brain cancer and DIPG parents are routinely told, “go make your child comfortable and make memories…”  And why are there no solutions? Because, “the numbers aren’t great enough for investors,” we discover, in the richest technologically advanced country in the world.  Adequate support for research into cures for pediatric cancer should be a no-brainer. Instead, out of sight and out of mind, the pediatric brain cancer death toll continues.  DIPG continues to rob children of the use of their bodies until finally respiration ceases, while most children retain full cognitive awareness throughout the process, and their parents are utterly powerless to save them.  

The missing ingredient is greater public awareness to the chronic lack of adequate research funding for childhood cancers, most of which are deadly, marginalized as rare, and devoid of solutions.  H. Res. 114 is a plea to Congress for help; our population is downtrodden, bereaved, yet determined to fight for those children yet to be diagnosed to have the chance to go to school, to find love; that they might live to, and through, adulthood.  In other words, they too ought to have, at the very least, hope for the opportunity for Life, Liberty, and the Pursuit of Happiness.  With your support, the consensus that our children’s lives ought to be more important will have higher regard in legislative matters, and questions of continuations and allocations won’t be so perilously considered.  And for what account, anyway? The American People clearly want the best for our children.  

The California Legislature passed the first DIPG Awareness Resolution in 2014.  In 2019, thirty-two states have designated May 17 as DIPG Awareness Day; the Alliance for Childhood Cancer has supplied a support letter to Energy and Commerce Committee Leadership, and multiple research institutions and foundations have endorsed this Resolution.  This information is included in the accompanying document.

We deeply appreciate your consideration on behalf of the children we are losing daily to DIPG, and, with your assistance, the possibility for hope you might bring to those currently fighting for their lives. 

Please support H. Res. 114, as all Childhood Cancer Caucus Co-Chairs have signed this iteration in a bi-partisan way.  Thank you for your service to the American People, and God bless you. 

Respectfully yours,

DIPG Advocacy Group 818-400-2724

Janet Demeter, Organizer (CA), Paul Miller (CO, US West), Elizabeth Psar (TN US South) Vicki Thomas (NY, NJ Metro), Walter and Michele Cramer (NJ US-NE), Kirsten Finley (FL, SC, LA), Bill Kohler (PA), Robin Dodd (KY, MT);,,,,,, 

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