Spearheading the Childhood Cancer Awareness Movement with the DIPG Awareness Resolution
Did you know that brain/CNS tumors lead in childhood cancer incidence and childhood cancer deaths? 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, a fact of which most remain uninformed. The experience of DIPG is a terrible wake-up call: with no effective solutions, we discover that “investment justification” and corporate interests matter more in the world of medical research than the urgency to save our children’s lives, even with available resources and willing, caring physicians and research scientists. 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 in the wealthiest country in the world because, “the numbers aren’t great enough for investors.”
There is no excuse.
“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.”
H. RES. 416 Press Summary
The DIPG Awareness Resolution in US Congress, H. RES. 416 (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.
- 5th introduction, May 17, 2023 in the House of Representatives of the National DIPG Awareness Resolution, H. RES. 416! Please urge your Representative to sign on to acknowledge the urgent, unmet medical needs of children with cancer. We intend to present to House Leadership, after 8 years of work, our case to allow suspension of rules consideration for this issue of urgency, that it may receive needed floor-time in the House, a consideration given to many less urgent resolutions in the House of Representatives the last 4 Congresses but denied Americas children facing a death sentence.
- US Senate UNANIMOUS CONSENT PASSAGE of the 2023 DIPG/Pediatric Brain Cancer Awareness Resolution (5th time) acknowledging support for research into cures for the leading causes of disease-related childhood deaths: brain cancer.
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 eight 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. We have made much progress, but still no attention granted on the floor of the House of Representatives–which would draw the needed attention, and education needed for a cure within 2 years instead of 10 years, and still no statement with the Cancer Moonshot that cancer is the leading disease-related cause of deaths in American Children. The experience of DIPG powerfully demonstrates the urgent need for our children to be accommodated rather than marginalized by the medical research investment culture.
However, the resistance to this acknowlegement is real, even among the ranks of upper-level civilian advocacy and government relations. We are activists with one goal: to shine a national spotlight on the suffering and deaths of our children, that a cure may be accelerated.
Dr. Michelle Monje speaks to the importance of DIPG and childhood brain cancer awareness to accelerate efforts toward finding effective therapies for the afflicted.
DIPG Advocacy Group at the 2/2/22 Announcement of the New Cancer Moonshot!
H. RES. 416
Rep. Brian Fitzpatrick, author of the Fairness to Kids with Cancer Act, on the importance of funding for pediatrics: