Spearheading the Childhood Cancer Awareness Movement with the Deadly, DIPG

Our Letter to Congress

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.

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.”

Letter to Congress, with Resolution Text H. Res. 404 Press Summary

The DIPG Awareness Resolution in US Congress (H. Res. 404) 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!

quick letter? Send here to your Rep in Congress!

Send a note to your Rep. in Congress here to stand in support for children with DIPG, pediatric brain cancer, and so many other deadly cancers and childhood diseases which have been neglected for research into cures.

Advocate with us–Here are 3 QUICKIES:

  • Easiest and best: Send a pre-written letter to your Rep, to which you may add or personalize
  • Register (childhood brain cancer families) to have us share your information and advocate for you in Congressional office meetings with staff with the option of joining us
  • Endorse: Whether an individual childhood cancer advocate, or organization, put your name and/or your organization’s name on the record.

#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

Press Release from Congresswoman Dingell (MI-12)

Press Summary gives a description for the public and a brief history of the Resolution.

DIPG Advocacy Group STRATEGY for the success of H. Res. 404–WE NEED YOUR HELP.

Click for info about the National DIPG Awareness Resolution in US Congress

“Expressing support for the designation of the 17th day in May as ‘‘DIPG Awareness Day’’ to raise greater awareness for childhood brain cancer, and to encourage research into cures for…pediatric cancers in general.”  

General Description
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 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.

Neil Armstrong’s daughter died of DIPG in 1962

So it’s not a law, it’s an Awareness Resolution.

What does it do?

  1. Raises awareness to DIPG, pediatric brain cancer, and the inadequacy of our medical research system in funding PEDIATRIC CANCER IN GENERAL.
  2.  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

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: