To the Leadership of the House of Representatives H. Res. 114, the DIPG Awareness Resolution

Sept. 3, 2019

To the Honorable Speaker Pelosi (CA-14) of the House of Representatives​, to House Majority Leader Hoyer(MD-5), House Minority Leader McCarthy(CA-23), and to the Honorable House Majority and Minority Whips, James Clyburn(SC-6) and Steve Scalise(LA-1):

To Chairman Pallone(NJ-6) and Ranking Member Walden (OR-2) of the House Energy and Commerce Committee, and Chairman Eshoo(D-18) and Ranking Member Burgess (TX-26) of the Health Subcommittee:

To all Members of elevated influence in the House of Representatives in matters affecting America’s children:

Thank you for considering this and the H. Res. 114 information being distributed among all members of the House of Representatives. Your position of leadership, and consideration of support for this Resolution is crucial to an over three-year struggle for its recognition and movement out of the Energy and Commerce Committee, that decades of hidden suffering might find the light of day. Those of us who are committed to advocating 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.

Our request for your support of H. Res. 114 in no way diminishes our appreciation for STAR, Race, Creating Hope, and Gabriella Miller Kids First, for which members of our DIPG Advocacy Group have actively advocated along with the larger childhood cancer groups. Still, the fight for allocations for instated laws and their re-approvals continues; the experiential status quo remains unchanged for us. The auspicious SOTU announcement for childhood cancer and the Presidential Initiative gives absolutely no guarantees amid the proposed budget cuts to the NCI.

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. 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, 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.

Sadly, 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 hear, in the richest and most technologically advanced country in the world. Adequate support for research into cures for pediatric cancer should be a no-brainer. Instead, DIPG continues to rob children of the use of their bodies until finally respiration ceases, while they retain full cognitive awareness throughout the process, and their parents must witness this in utter helplessness to save them.

We appreciate your considering the importance of public awareness, H. Res. 114, and the designated day May 17, we hope with an understanding of its democratic intention. Where parent-led foundations are currently saddled with the burden of funding the research, this awareness would help their efforts immensely and also alert the larger philanthropic community; with this recognition, the general consensus that our children ought to have greater consideration will begin to have higher regard in legislative matters. The California Legislature passed the first DIPG Awareness Resolution in 2014. In 2019, thirty-two states have designated May 17 as DIPG Awareness Day.

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.

Thank you for your service to the American People, and God bless you. Respectfully yours,

DIPG Advocacy Group

jacksangels1@gmail.com

818-400-2724

www.dipgadvocacy.org

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); stopkidscancer@gmail.com​, ​ekspar@gmail.com​, ​thomasvictoria0725@gmail.com​, ​wcramer6@yahoo.com​, kirsten@cannonballsforkayne.org​, ​bill@4aydenstrong.com​, ​robin.dodd@uky.edu

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