Sending Office: Honorable Stephen Knight
Request for Cosponsor(s)
Current cosponsors (18): Speier, McCaul, Eshoo, Cárdenas, Murphy (PA), Comstock, Dingell, Delaney, Brownley, Soto, Tonko, Hurd, Smith (TX), Kennedy, Chaffetz, Duncan (TN), Rush, Costello
May 17 is National Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day, which helps advocacy for increased attention and funding for a disease that only effects children and has a 100% mortality rate. To help their cause, Congresswoman Jackie Speier and
I introduced H. Res. 69 to formally recognize DIPG advocates’ nationwide effort. As we near the 17th, we are reaching out for new signatories to show support on the day of their annual rallies, walkathons, and other engagement activities.
Chad Carr, the five-year old whose brain cancer battle became the cause of the University of Michigan football team, brought national attention to an extremely deadly form of pediatric cancer. Each year 200-400 children, typically aged 5-7, are diagnosed
with a cancerous brain tumor in the Pons part of their brain stem, but details about the cases are often obscured in the news, referred to generically as “a rare pediatric cancer.”
In fact, DIPG is one of the more common pediatric brain tumors, and less than one percent of its victims live more than five years after diagnosis. Partly due to the disease’s fatality, which leaves few surviving patients to demand treatment, and with the
media’s silence on the issue, there is no market incentive to research cures. Each and every parent whose child is diagnosed with DIPG is told the same thing by doctors: “There is no solution.” Parents of children in our districts, and in many of yours, feel
helpless because there is almost nothing outside of palliative care that they can do for their children.
In his memory, Chad Carr’s supporters have used the #ChadTough message to break the silence surrounding DIPG. It is critical we continue their efforts to shed light on this devastating disease whose victims are in desperate need of treatments, and of course,
DIPG is responsible for the most pediatric brain tumor deaths each year and has maintained one of the lowest survival rates; the median survival time is only nine months. However, only 4% of the NCI budget for research targets pediatric research as a whole,
and many forms of pediatric cancer, considered rare, receive almost no funding. Without strengthening awareness for DIPG and other lesser known pediatric cancers, the youngest and most vulnerable patients will continue to fight without treatment.
This resolution: (1) calls for the recognition of a “DIPG Awareness Day” around which pediatric cancer advocates can organize events; (2) focuses attention on the disease; (3) supports expanded research for treatments and care; (4) encourages the National
Cancer Institute to factor in the number of life years lost when considering disease research grants.
Should you have any questions, or should you wish to cosponsor, please contact Adam Brooks with Rep. Knight at
Adam.Brooks@mail.house.gov or 2-4671, or Molly Fishman with Rep. Jackie Speier at
Molly.Fishman@mail.house.gov. Thank you for your consideration.
Steve Knight Jackie Speier
Member of Congress Member of Congress
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