“Dear Mr. Speaker…”
We believe we’ve got a shot at a unifying prospect for the House of Representatives. The issue is non-partisan; there is no money in the resolution. It simply shines a national spotlight on an issue affecting our most precious population which has remained in obscurity for decades, and has been indirectly addressed in childhood cancer legislation. Despite all advances in such legislation, made possible only by the relentless efforts of parents and childhood cancer advocates in educating Congress to the realities we face, still nothing has changed significantly for children with brain cancer (the #1 cause of disease-related deaths in children in the US) to either relieve their suffering, or to save their lives. H. RES. 416 ensures awareness of the unseen yet urgent, unmet medical needs of America’s children with cancer, one that can’t be forgotten next week, or next year: WE INSIST UPON DIPG AWARENESS DAY.
Download and/or read our current LETTER TO CONGRESS here.
First, our FALL CAMPAIGN lunches August 12 in full force with a toolkit on the main advocacy page on August 2. To make sure your rep is signed on, please send them a quick letter here: bit.ly/dare-2024
Little did we know we’d taken on a Mission Impossible.
Click here to support H. RES. 416, and share the message with this link: bit.ly/dare-2024
DIPG Advocacy Group is the advocacy arm of Jack’s Angels Foundation, with a continuing mission to pass the DIPG Awareness Resolution in the U. S. House of Representatives. This would be a precedent-setting achievement with regard to the direct acknowledgement of the urgent, unmet medical needs of our children, an acceleration toward a cure with the awareness raised, and a strengthening of evolving networks of research infrastructure to accommodate our children and accelerate the development of resources. It’s the whole idea of the Moonshot4Kids. We can’t get to a cure fast enough with so little investment into childhood cancer research. All the kids who joined us at the 2020 – 2022 Congressional briefings (dipgbriefings.com) who were under care, are gone. We owe it to those who live under the constant shadow of the monster DIPG to find a cure more quickly–for those fighting right now, and those yet to be diagnosed. We have all the technology and human-power resources we need, except adequate investment.
Why should it be impossible? Why so much resistance?
On behalf of children facing certain death and their families, we insist on there being a conversation about DIPG and childhood brain cancer at the highest possible levels of advocacy and government, that children and the dying be priorities in our medical research system. That has begun to happen with this Administration. The Cancer Moonshot is stepping it up for childhood brain cancers by acknowledging their deadly nature, but they have been consistently unwilling to confront in a direct manner the chronic lack of adequate investment into childhood cancer research. This may sound ungrateful, but the simple acknowledgment of the fact that cancer is the leading disease-related cause of death in children was missing from each Cancer Moonshot Announcement (2022, 2023) involving the President.
Furthermore, we have found, after 8 years of advocating for this acknowledgement with the DIPG Awareness Resolution, that indeed some in the upper levels of civilian advocacy have acted in direct opposition to populist activism on behalf of children in the face of the corporate domination of the medical research investment culture. Republican or Democrat, leaders like to share that they value “The Will of The People” over corporate influences but to date, none have taken any remedial action or have shared a plan for it. Our government and its donors have not proven to be willing to confront the fact that special interests come before the People’s interests, clearly tainting the integrity of our democracy. Where there is no will there is no way. HOWEVER, the establishment of DIPG Awareness Day through the introduction of the House resolution for the past 5 Congresses, the passage of the date specific Senate Resolution 6 times by unanimous consent, and movement at the state level to acknowledge DIPG/childhood brain cancer by governor or state legislature which began in 2014 has indeed helped generate the conversation without the House Resolution getting to the floor for a vote. In fact, the House Resolution had 220 cosponsors in the 117th Congress. People still don’t know that killers like DIPG exist, and children continue to suffer and die in obscurity unnecessarily in the wealthiest country in the world.
