How do we educate people to the fact that childhood cancer is the #1 disease-related cause of death in children and there has been no change in treatment options or prognosis for the deadliest tumors like DIPG since Neil Armstrong’s daughter died of it in 1962? #passHRES404!!
The DIPG Awareness Resolution (H. Res. 404) is a simple House Resolution which was first introduced on January 13, 2016, just one day after the initial Cancer Moonshot Initiative was announced. Today, we are poised to have the support of a solid House Majority! After 4 introductions, 7 years of hard work, and 2600 more children lost to DIPG alone, help us get it over the finish line! Ask your Rep to sign it today!
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As an Ambassador for childhood cancer in H.Res. 404, DIPG, diffuse intrinsic pontine glioma, the 2nd most commonly diagnosed brain tumor in children and the deadliest, exemplifies in a powerful way the reality that most children with cancer are expected to endure: lack of effective therapies designed for their cancer, poor prognosis, a greatly shortened life, and compromised health for rare survivors. Parents discover quickly that there are no solutions for our children because, in the wealthiest country in the world, “the numbers aren’t great enough for investors.” This unacceptable reality inspired the writing of the DIPG Awareness Resolution, which shines a light on this tragedy and suggests that pediatric and high-mortality rate cancers have greater consideration for research grants, and that federal funding be increased for pediatric cancers in general considering the unmet medical needs of our children.
Despite the passage of several pieces of childhood cancer legislation over the last decade, and the fact that, due to parent investment, we are very close to finding cures, we are still so far away without enough funding for clinical trials; nothing has changed experientially for DIPG. It is still a death sentence, as very little has changed for most childhood cancers. Awareness is the missing link to speeding a cure.
With the DIPG Awareness Resolution, we are asking our closest representation in the Federal Government, our Members of the House of Representatives, to lend their unique power to draw attention to these facts for us by giving the resolution a chance for an actual presentation and vote–that we might attract a cure more quickly, problem-solve the inequities in funding for pediatric and high-mortality rate cancers, and create a less compromising legislative culture for important bills that directly affect the lives of our children. Where we parents are helpless to save our children, this is one small action on the part of our representatives–a simple signature– which can help, today!
Please ask your representative in Congress to support H. Res. 404, the DIPG Awareness Resolution. Have them contact Rep.Debbie Dingell’s office (202-225-4071), special Legislative Assistant Mag Makarewicz, firstname.lastname@example.org. See if your Rep is already signed on to the list of cosponsors here: and if so, thank them! If not, please share passhres404.com with your local friends, neighbors and relatives who would like to help!
Repeat, share, repeat. It will for sure pass if people take this action; thank you!