The DIPG Advocacy Group is the advocacy arm of Jack’s Angels, founded by Janet Demeter and Paul Miller, which has led with the grace of childhood brain cancer families, organizations and individual childhood cancer advocates across the country the effort to educate our elected federal officials about DIPG, pediatric brain cancer, and the realities faced by the childhood cancer community with the DIPG Awareness Resolution in US Congress, H. Res. 416. Awareness is the first step in accelerating a cure and summoning greater support for research funding for the deadliest and most rapacious killer of our children, pediatric brain cancer. DIPG is the second most common type of pediatric brain tumor, and is responsible for the majority of pediatric brain cancer deaths, a significant portion of the annual childhood cancer death toll. Until the general public and the powers that be are more fully aware and can fully acknowledge the fact that our medical industrial complex marginalizes, rather than accommodates, the urgent unmet medical needs of children with cancer, progress will continue to be inadequate to make a real difference in their lives or to save them, at least not anytime soon.
We strongly believe that by raising awareness with H. Res. 416, the success of all childhood cancer legislation and policy is met with less resistance. The national narratives and common thoughts about childhood cancer, with the fact that more children are surviving certain types of cancer like leukemia due to heavy investment into adult cancers translated for childhood leukemia, and the billions we put into the NIH–all this gives the false impression that we invest in our children; the boots-on-the-ground reality is quite different. H. Res. 416 gives a window into the reality and urgency of the situation for most children afflicted with cancer and other deadly pediatric disease. They are all marginalized as rare, and therefore to the investment culture in place, irrelevant. We must do better for our children. But if no one knows, help cannot come quickly enough. We hope you join us in this fight, and ask your Representative in Congress to sign the DIPG Awareness Resolution, H. Res. 416, as we work with our legislators for it to have actual House floor-time consideration, which would give it actual attention, discussion, and the national spotlight this obscure and hidden issue of a voiceless community desperately needs. Thank you.
To DONATE in support of our work, use the memo “advocacy” with your donation to Jack’s Angels.
LEADING DEMOCRAT SPONSOR: Congresswoman Debbie Dingell (D-MI-6)
LEADING REPUBLICAN SPONSORS: Congressman David Joyce (R-OH-14) and Congressman Michael McCaul (R-TX-10)