The current medical research system…is non-apologetically and systematically divested of concern.<\/p><\/blockquote>\n
![\"\"](\"https:\/\/jacksangelsfoundation.com\/wp-content\/uploads\/2018\/04\/Paige2.jpg\")
<\/a>Paige McKee-Davis passed away days before the trip; her case was brought to Dr. Burgess (TX-26), Chairman of the Health Subcommittee<\/p><\/div>\n
April 12, 2018, Santa Clarita, CA–<\/span>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\u2019s 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 \u201cunapologetically and systematically divested of concern,\u201d explains Demeter.<\/span><\/p>\n 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. <\/span><\/p>\n 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\u2019s daughter died of DIPG in 1962, and today\u2019s standard treatment protocol and terminal prognosis have seen no change since then.<\/span><\/p>\n Janet Demeter, DIPG Advocacy Group\u2019s organizer, lost her own son Jack to DIPG July 30 of 2012, \u201cIt was a hope-obliterating experience…and to discover that there has been insufficient research activity for decades, literally, because \u2018the numbers aren\u2019t great enough for investors\u2019…as if this were a rationale for doing nothing..it\u2019s terrible beyond my ability to explain,\u201d 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. \u201cIt couldn\u2019t have been a more clear case to fight for children with cancer.\u201d<\/span><\/p>\n 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. \u201cRoughly 800 more children\u00a0<\/span>have died of DIPG since its initial introduction 2 \u00bd years ago to the 114th Congress; we\u2019re very motivated to get this recognized and passed. In our DIPG community we see kids diagnosed and and kids die, daily.\u201d<\/span><\/div>\n<\/div>\n 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, \u201cwhile our bereaved community is more difficult to organize at the level of congressional districts…it\u2019s an unfair burden for the bereaved community; we need the support of concerned citizens everywhere.\u201d<\/span><\/p>\n For more information about this event, movement, and the activities of the DIPG Advocacy Group, visit <\/span>www.hres69.org<\/span><\/a>, 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\u2019s Angels Foundation in Agua Dulce, CA.<\/span><\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":" April 14, 2018 The current medical research system…is non-apologetically and systematically divested of concern. 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\u2026<\/p>\n