Spearheading the Childhood Cancer Awareness Movement with the Deadly, DIPG
Help us get 28 more signatures on The National DIPG Awareness Resolution, that it might finally get consideration from House Leadership after 5 years, 3 Congresses, and 2000 more children lost to DIPG in the US alone since the first introduction of the Resolution in 2016.
Please visit the Finish Line 218 page
In honor of Owen Jansen-VanVuuren
News of his death came near noon 11/17 EST here in the US. Owen’s family lives in Johannesburg, SA.
Did you know that brain cancer is the most prevalent form of childhood cancer, and the leading cause of cancer-related death in children? 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 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.
The experience of DIPG powerfully demonstrates the urgent need for our children to be accommodated rather than marginalized by the medical research investment culture in place.
#Moonshot4Kids H. Res. 114 Press Summary
“Expressing support for the designation of the 17th day in May as ‘‘DIPG Awareness Day’’ to raise awareness and encourage research into cures for…pediatric cancers in general.”
Despite its consistent death toll as the leading cause of disease-related childhood mortality in the US, pediatric brain cancer, of which DIPG (diffuse intrinsic pontine glioma) is the 2nd most common type and the deadliest, has seen no significant change in the standard treatment protocol nor prognosis of the worst variety since Neil Armstrong’s daughter died of it in 1962.
DIPG exemplifies in a powerful way the challenges in treating pediatric cancer and the daily tragedies which ensue from the general lack of solutions our medical research industry has for deadly pediatric disease.
The DIPG Awareness Resolution (H. Res. 114) is a simple House Resolution requiring only a House vote to pass; it is not a law. It is apolitical with no funds allocated. It does, however, suggest that for any given cancer type, that the years of life lost associated it as well as the mortality rate be given elevated consideration in the research grant process with public and private funding sources. It shines a national spotlight on an issue of human suffering which has remained in obscurity and imposed irrelevance for decades.
And so, why DIPG; why is it important?
Despite the recent passage of the STAR Act (10 years after the signing of its failed precursor), the RACE Act, 21st Century Cures Act, and the Creating Hope Act, still, less than 4% of the National Cancer Institute budget for research has been designated for all childhood cancers combined in any given year over the last decade.
The experiential status quo has not changed for us; there are few solutions for children with cancer. The battle for awareness continues, and bereaved parents continue to shoulder the burden of funding the research.
So it’s not a law, it’s an Awareness Resolution.
What does it do?
- Raises awareness to DIPG, pediatric brain cancer, and the inadequacy of our medical research system in funding PEDIATRIC CANCER IN GENERAL.
- Asks that pediatric and high mortality-rate cancers be given greater consideration in the research grant process with public and private funding sources.
Whereas Federal funding for research for pediatric cancer should be increased to address the level of unmet medical need for this vulnerable population…” #Moonshot4Kids
Support the DIPG Awareness Resolution in Congress, H. Res. 114
Ask your Representative to support it, today!
“…encourages all people of the United States to become more informed about…the current challenges to the medical research system in designating sufficient research funding for pediatric cancers…”
“…encourages public and private sources of research funding to elevate their consideration of the mortality rate of a type of cancer, as well as the life-years lost…”
The Truth Is, without examples like DIPG for the public to consider, the status quo is likely to continue. So, let’s get a #HouseVote for H. Res. 114!
All pediatric cancers are marginalized as rare and receive inadequate research funding into cures. The DIPG Awareness Resolution calls for greater consideration for pediatric and high-mortality rate cancers for research funding, especially with our government resources. It also designates May 17 as National DIPG Awareness Day in the USA, as May is Brain Tumor Awareness Month.
Rep. Brian Fitzpatrick, author of the Fairness to Kids with Cancer Act, on the importance of funding for pediatrics: