Death Sentence for 300+ Children Each Year in the United States Motivates DIPG Advocacy Group Trip to Washington DC

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What's your child's life worth? Our current medical research system's answer to that question posed by parents of children with terminal brain cancer is bleak; "the numbers aren't great enough for investors." The DIPG Advocacy Group is on a mission, traveling to Washington DC with statements of support from all over the country for a House vote on H.Res.69, the national DIPG Awareness Resolution.

DIPG...couldn't make a more powerful case to fight for the lives of children with cancer...

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The DIPG Advocacy Group, organized by childhood cancer advocate Janet Demeter of Agua Dulce, CA, is preparing a trip to Washington DC for the week of April 16, 2018 to visit the offices of Congress in support of H.Res.69, the DIPG Awareness Resolution. The Resolution, jointly introduced by Reps Steve Knight (R-CA-25) and Jackie Speier (D-CA-14) in January of 2017, designates a national DIPG Awareness Day, May 17. DIPG is arguably one of the world’s deadliest pediatric cancers; the Resolution encourages greater research consideration for children and the dying in our current medical research system, which, according to Demeter is, "nonapologetically and systematically divested of concern."

The group traveling to DC consists of individual advocates including Paul Miller, co-founder of the group and also candidate for representing the 28th District of the Colorado State legislature, the Psar family of Knoxville TN of the Julia Barbara Foundation, Melany Knott of Mt. Airy, Maryland, and her daughter Kaisy (13) who is in active experimental treatment in Monterrey Mexico for DIPG, among others.

DIPG, or diffuse intrinsic pontine glioma, is an horrific death sentence for a young child. A malignant, diffusely infiltrating brain tumor, DIPG develops in the pons area of the brainstem which is responsible for neural transmissions to and from the brain to the body, and is also the most protected area of the body; DIPG is resistant to conventional medical chemotherapy treatments, and is inoperable. The median survival time post-diagnosis is 9 months with radiation treatment, and long-term survival prognosis is a dismal less than 1%. Parents are routinely told to go ahead and make memories, and enjoy last moments with the child. Neil Armstrong’s daughter died of DIPG in 1962, and today’s standard treatment protocol and terminal prognosis have seen no change since then.*

Janet Demeter, DIPG Advocacy Group’s organizer, lost her own son Jack to DIPG July 30 of 2012, and founded Jack's Angels for DIPG awareness and research in Agua Dulce CA. “It was a hope-obliterating experience...and to discover that there has been insufficient research activity for decades, literally, because ‘the numbers aren’t great enough for investors’...as if this were a rationale for doing nothing...it’s terrible beyond my ability to explain,” she said.

Motivating her further, after the death of her son she discovered that brain tumors are the leading cause of death in kids with cancer, and that DIPG, a disease marginalized as rare, like most childhood cancers, and therefore unworthy of research investment, is responsible for the majority of brain tumor deaths annually in the United States.* “It couldn’t make a more powerful case to fight for the lives of children with cancer,” maintains the group organizer.

California was actually the first state to pass a DIPG Awareness Resolution in 2014, due to the appreciation for Jack's Angels Foundation of then CA-State Assemblyman Scott Wilk(R-38), currently CA-State Senator Wilk(R-21), and then CA-State Senator Knight. After Steve Knight (R-CA-25) took office in Congress in 2015, Mrs. Demeter began working with his office to create the initial version of the bill introduced Jan. 13, 2016 as H.Res.586. That year the Michael Mosier Defeat DIPG Foundation began to help DIPG families organize in as many states as possible to push for May 17 DIPG Awareness Day, and before the national resolution was reintroduced in 2017, the awareness week(last week of May, Brain Tumor Awareness Month) was changed to May 17 for a coherent effort among advocates.

H.Res.69 requires only a vote in the House of Representatives to instate DIPG Awareness Day, and thus far has 29 co-sponsors, Ruben Gallego (D-AZ-7) most recently, and also Andy Barr (R-KY-6), Duncan Hunter (R-CA-50), Jackie Rosen (D-NV-3) and Doris Matsui (D-CA-6). Yet raising awareness can be slow-going, as the bill has not been considered by the Energy and Commerce Committee where it sits, and which controls its fate. “Roughly 800 more children have died of DIPG since its initial introduction 2 ½ years ago to the 114th Congress; we’re very motivated to get this recognized and passed. In our DIPG community we see kids diagnosed and and kids die, daily.”

Appointments on the Hill include meetings with staff for Chairman Greg Walden (R-OR-2), Brett Guthrie (R-KY-2), and Chairman of the Health Subcommittee Dr. Michael Burgess (R-TX-26), other committee members, and those representatives to whom the group is bringing special constituent requests for H.Res.69 co-sponsorship. Senate office meetings have also been scheduled; the group feels the cause may be better represented in the Senate, as the movement in the states is strong, “while for our bereaved community it is more difficult to organize at the level of congressional districts...it’s an unfair burden; we need the support for those who cannot speak."

For more information about this event, the DIPG awareness movement, and the activities of the DIPG Advocacy Group, visit http://www.hres69.org, or their group page on Facebook, DIPG Advocacy Group. The group is a grassroots organization with no corporate backing, just volunteering advocates, initiated by Jack’s Angels Foundation in Agua Dulce, CA.

*Statistical sources:
American Childhood Cancer Organization http://www.acco.org,
CureSearch http://www.curesearch.org,
Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones,
St. Judes Research Center http://www.stjudes.org,
Pediatric Brain Tumor Foundation http://pbtf.us,
The Lyla Nsouli Foundation for DIPG Research, http://www.lylansoulifoundation.org
Jack's Angels Foundation, http://www.jacksangels.org

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