The DIPG Advocacy Group is a coalition of childhood cancer organizations and individual childhood cancer advocates dedicated to the success of the DIPG Awareness Resolution in US Congress, H. Res. 404. Awareness is the first step toward greater research funding for the deadliest and most rapacious killer of our children, pediatric brain cancer. DIPG is the second most common type, and is responsible for the majority of pediatric brain cancer deaths. On its own it represents a literal “death-row” for children with cancer, with only a rare few ever escaping. Until the general public and the powers that be are more fully aware of the fact that our medical industrial complex marginalizes, rather than accommodates, the urgent needs of children with cancer, progress will continue to be inadequate to make a real difference in their lives or to save them.
We strongly believe that raising awareness to the failure of our medical research investment culture in accommodating the urgent, unmet needs of America’s children with H. Res. 404, the success of all childhood cancer legislation and policy will be met with less resistance. The Creating Hope Act Reauthorization of 2019 should have been passed without compromising its funding authorization. The Gabriella Miller Kids First Research Act 2.0, genius in its funding without tax-payer dollars supporting a crucial data-base for scientific research, is a no-brainer. All other measures supporting access and coverage to care for children with deadly disease at this difficult time of pandemic should have already been addressed…but the awareness of urgency is not there, hence the #Moonshot4Kids! The national narratives and common thoughts about childhood cancer, with St. Jude’s commercials, 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. With H. Res. 404, the powerful example of a killer like DIPG run-rampant for decades without intervention, causing prolific suffering and deaths, 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, no one cares. We hope you join us in this fight, and ask your Representative in Congress to sign the DIPG Awareness Resolution, H. Res. 404. Thank you!
Many individual childhood cancer advocates
LEADING DEMOCRAT SPONSOR: Congresswoman Jackie Speier (D-CA-14)
LEADING REPUBLICAN SPONSOR: Congressman David Joyce (R-OH-14)