Spearheading the Childhood Cancer Awareness Movement with DIPG
Big alert coming soon about 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! But for now:
Please lend your fitness/wellness STEPS, MILES, or KILOMETERS to draw a huge heart around Ukraine, and register with Jack’s Heart for Ukraine, supporting THE organization helping children with cancer and their families in our war-torn sister country! #childhoodcancer #UkraineWar
activity conversion chart | registration flyer
Feb-March 2023 Fundraising Event for Kids-of-Ukraine:
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.
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.
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.
“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: