Guest Post: Help Make Childhood Cancer Awareness History!
Janet Demeter is a childhood brain cancer advocate and leader of Jack’s Angels Foundation (Agua Dulce, CA).
She’s also a founder of DIPG Advocacy Group, a coalition of childhood brain cancer advocates and organizations supporting the DIPG Awareness Resolution in US Congress.
This year - actually in the window of the next few months - we have the opportunity to make some important history for childhood cancer awareness. The DIPG Awareness Resolution, H. Res. 404, is poised to have a House Majority of support officially signed on within the next few weeks.
If passed, it would not only make history as one of only two “commemorative” resolutions to pass the House (the other being for Patriot’s Day) and the only childhood cancer resolution to achieve over 200 signatures, but it would also set a precedent of acknowledgement, at the national level, of the urgent, unmet medical needs of children with cancer.
Steve and Janet
Pictured: Children’s Cancer Cause CEO Steve Wosahla and Janet Demeter together in Washington, DC in September 2022.
It’s wonderful to agree and support childhood cancer awareness so powerfully within our community, but the real game-changer is to have an Ambassador for childhood cancer like DIPG which can, with this resolution, raise the consciousness of the national population to the following facts which only come to us when we are directly impacted by childhood cancer, or by childhood brain cancer.
Did you know…
Cancer is the #1 disease-related cause of death in children, pediatric brain cancer leads in childhood cancer incidence and is #1 in childhood cancer deaths?
That DIPG is responsible for the majority of childhood brain cancer deaths, and on its own represents a significant portion of the annual childhood cancer death toll in the United States?
And that there’s been no change in the standard treatment protocol for DIPG, nor its prognosis, since astronaut Neil Armstrong’s daughter died of it in 1962?
That children with cancer have been systematically, no matter how unintentionally, left behind for research into cures?
That’s the toughest part, because no one intends this, and we don’t like to think about failure and blame. But until there is an acknowledgement of the children left behind, nothing will change for them fast enough. We have the technology and willing physician scientists to help these kids, and we are literally on the threshold of a cure for DIPG, for example. Yet, tragically, these kids continue to die due to lack of investment, despite the important legislative progress we’ve made over the last decade for childhood cancer.
Over 2,600 kids have died of DIPG alone since the resolution was first introduced in 2016; they continue to fight a death sentence, unarmed in an invisible war. If we had the same resolve to save these kids today as we did to beat the Russians to the moon, our legislative allocations would be met with less resistance and we’d produce cures for childhood cancer more quickly.
Please ask your Representative to sign H. Res. 404, a bipartisan resolution with the aim to accelerate our progress into cures for childhood cancers. If no one knows, no one can care to help, and nothing changes quickly enough. And if your Rep is already a supporter, thank them!
Beginning Friday Sept. 30th, for September through October and beyond, an advocacy toolkit will be available at www.passhres404.info including videos, social media and phone call/letter messaging, hashtags, thank yous to cosponsors, and more. Let's make history together!
Thank you!
-Janet Demeter