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April 15, 2018 pdf version
The Honorable Frank Pallone, Jr. Chairman, Committee on Energy & Commerce 2107 Rayburn House Office Building Washington, DC 20515
The Honorable Greg Walden, Ranking Member, Committee on Energy & Commerce 2185 Rayburn House Office Building Washington, DC 20515
Dear Chairman Pallone and Ranking Member Walden,
The undersigned childhood cancer organizations are members of the Alliance for Childhood Cancer, consisting of patient advocacy groups, healthcare professionals and scientific organizations, representing millions of Americans who care deeply about childhood cancer. We write in support of House Resolution 114, which would designate May 17th as “DIPG Awareness Day” to raise awareness and encourage research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general.
Diffuse Intrinsic Pontine Glioma is the leading cause of childhood brain tumor deaths. Every year, 200-400 children in the U.S. will be diagnosed with DIPG, and most of them will only survive nine months, or about as long as the typical school year. There is currently no consistent standard of care for these kids, and few treatments.
The House resolution designating a DIPG Awareness Day would help spread awareness about this deadly disease, and support researchers in their efforts to find new therapies to treat DIPG. In addition, the resolution proposes that private and public research funding “elevate the consideration of the mortality rate of a type of cancer” to ensure that research is funded to find treatments for those with the most challenging diseases.
While all childhood cancer is devastating, DIPG is a particularly terrible disease that leaves children and their families with limited options and limited time. We urge you to pass this resolution to honor those children whose lives have been lost, and to encourage additional research to give hope for children diagnosed in the future.
Children’s Oncology Group
Rally Foundation for Childhood Cancer Research
Children’s Brain Tumor Foundation
Children’s Cause for Cancer Advocacy
The Andrew McDonough B+ Foundation
Association of Pediatric Hematology/Oncology Nurses
National Brain Tumor Society
American Society of Pediatric Hematology/Oncology
American Childhood Cancer Organization
CureSearch for Children’s Cancer
St. Baldrick’s Foundation
Association of Pediatric Oncology Social Workers
American Cancer Society/Cancer Action Network
Cc: Members of Congress
2318 Mill Road Alexandria, VA 22314/ firstname.lastname@example.org/ www.allianceforchildhoodcancer.org