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

April 14, 2018

The current medical research system…is non-apologetically and systematically divested of concern.

Paige McKee-Davis passed away days before the trip; her case was brought to Dr. Burgess (TX-26), Chairman of the Health Subcommittee

April 12, 2018, Santa Clarita, CA–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 awareness day, May 17, for DIPG, arguably one of the world’s deadliest pediatric cancers, encourages greater research consideration for children and the dying in our current medical research system, which, for those affected by pediatric cancer, is “unapologetically and systematically divested of concern,” explains Demeter.

The Group traveling to DC consists of individual advocates including Paul Miller, co-founder of the group from Littleton CO, the Psar family of Knoxville TN of the Julia Barbara Foundation, Melany Knott of Mt. Airy, Maryland, and her daughter Kaisy who is in active experimental treatment for DIPG in Monterrey, Mexico, will be joining the ranks, among others.

DIPG, or diffuse intrinsic pontine glioma, represents for those acquainted with the disease 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 in perhaps 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, “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. Demeter became all the more motivated after the death of her son when she discovered that brain tumors are the leading cause of death in kids with cancer, and that DIPG, a disease described to her as insignificant, is responsible for the majority of brain tumor deaths annually in the United States. “It couldn’t have been a more clear case to fight for children with cancer.”

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 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 our bereaved community is more difficult to organize at the level of congressional districts…it’s an unfair burden for the bereaved community; we need the support of concerned citizens everywhere.”

For more information about this event, movement, and the activities of the DIPG Advocacy Group, visit 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.

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