May 4, 2020
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To the Honorable Members of the United States Senate, and Staff:
DIPG Advocacy Group and its Affiliates would like to thank you for having supported the 2019 DIPG Pediatric Brain Cancer Awareness Resolution. DIPG, or diffuse intrinsic pontine glioma, is the second most common pediatric brain cancer, and the very deadliest, for which there has been no change in standard treatment protocol since Neil Armstrong’s daughter Karen died of it in 1962. It exemplifies in a powerful way the challenges to treating pediatric cancer and the daily tragedies which ensue from the general lack of solutions our medical research industry has for children with deadly disease. We need your support for the introduction of the 2020 Resolution designating the May 17th Awareness Day.
Covid-19 is an emergency and should demand our best and full attention, but it will come and go. DIPG and pediatric brain cancer, representing the greatest portion of the annual childhood cancer death toll, will continue to take lives in the wealthiest country in the world because, “the numbers aren’t great enough for investors.” Both diseases are exposing failures in our systems, respectively, of medical care and of medical research to adequately address the urgent, unmet needs of our most vulnerable citizens. It would be tragic still if this movement for awareness for pediatric brain cancer, during Brain Tumor Awareness Month, were to become another casualty of the pandemic when all we are asking for our children is a day of recognition, a motion which would support and not detract from other measures important to national interest in this time.
This Resolution is a plea to Congress for help; with greater awareness we could save lives now, but whether it’s the pandemic, an unprecedented political crisis, threat of war, or countless smaller issues, for Congress there is always something more important than our children who have no voice, even with repeated appeals for help on their behalf. We appreciate the help of the Senate where another 1600 children have died of DIPG alone while the House Resolution has gone without committee movement since its first introduction in 2016.
We ask you to support and cosponsor the 2020 National DIPG Pediatric Brain Cancer Awareness Resolution, our #Moonshot4Kids, that this year it may still pass in advance of May 17th date to the recognize America’s children who are fighting for their lives. We thank you for your leadership! In gratitude we remain,
Respectfully yours,
DIPG Advocacy Group Founders
661-977-3125 (CA office)