Spearheading the Childhood Cancer Awareness Movement with DIPG
Coming soon:
- INTRODUCTION in the House of Representatives for the 118th Congress, the National DIPG Awareness Resolution! Please urge your Representative to sign on as original cosponsors!
- INTRODUCTION in the US Senate of the 2023 DIPG/Pediatric Brain Cancer Awareness Resolution acknowledging support for research into cures for the leading causes of disease-related childhood deaths: brain cancer.
- What does this mean? These powerful acknowledgements from our Representatives in Congress give us the opportunity to work with championing legislators to push for actual language in the Fiscal Year 2024 Budget Bill to include childhood brain cancer, the #1 cause of cancer-related death in children. It takes a Village, People, so please lend your voice and a few minutes to let your Senators and the Representatives in your state know how important this is for children, everywhere.
Did you know that brain/CNS tumors lead in childhood cancer incidence, and childhood cancer deaths? It’s also one of the least-funded areas of cancer research. DIPG, diffuse intrinsic pontine glioma, is perhaps the deadliest of them all, responsible on its own for a significant portion of the annual childhood cancer death toll. The experience of DIPG is a terrible wake-up call: with no viable solutions, we discover that “investment justification” matters more in the world of medical research than the urgency to save our children’s lives. DIPG exemplifies in a profound way the experience that so many children with cancer and their families endure–to watch their children die in utter helplessness with few, if any, out-dated, ineffective therapies available.
Our kids don’t deserve a death sentence, and our parents don’t deserve to hear that they have to watch their children die because of contrary investment values in the wealthiest country in the world.
For seven years, with the DIPG Awareness Resolution we have attempted to gain the acknowledgement of our government officials of the urgent, unmet medical needs of children with cancer. The experience of DIPG powerfully demonstrates the urgent need for our children to be accommodated rather than marginalized by the medical research investment culture.
Fiscal Year 2024 funding bill language proposal to include targeting #DIPG and pediatric brain cancer!–be ready to rally YOUR members of Congress in the House and Senate
“With this resolution we are asking our members of Congress to help bring the merciless suffering and deaths of our children out of obscurity, that we might attract a cure for them more quickly, and educate about the prevalence and symptoms of childhood brain cancer to save lives today.”
However, the resistance to this acknowlegement is real, even among the ranks of upper-level civilian advocacy and government relations.
The DIPG Awareness Resolution in US Congress (H. Res. 404 in the 117thC) directly confronts the neglect of childhood cancer research and suggests that pediatric and high-mortality rate cancers have greater consideration in the research grant process. In other words, it suggests that children and the dying be a greater priority for research into cures. It also suggests that federal funding for childhood cancer research be increased to better accommodate the unmet needs of our children.
DIPG Advocacy Group at the 2/2/22 Announcement of the New Cancer Moonshot!
#Moonshot4Kids Press Summary 117th Congress Letter to Congress. H. Res. 404 text
Dr. Michelle Monje speaks to the importance of DIPG and childhood brain cancer awareness to accelerate efforts toward finding effective therapies for the afflicted.
H. RES. 404
Rep. Brian Fitzpatrick, author of the Fairness to Kids with Cancer Act, on the importance of funding for pediatrics: