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U.S. Congresswoman Debbie Dingell (MI-12) today commemorated Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day by joining Rep. Steve Knight (CA-25) and Rep. Jackie Speier (CA-14) in calling for action on H. Res 69, a bipartisan resolution the Representatives introduced in January to support expanded research for treatments and care for DIPG. Dingell’s constituent five-year-old Chad Carr lost his battle with DIPG in 2015.

“DIPG is a devastating disease that no family should have to experience,” said Dingell. “In Michigan, we witnessed the courage, trauma and faith of the Carr family – and especially their son and brother Chad, who became a hero for finding a cure. Chad Carr lost his battle with this rare form of pediatric brain cancer at five years old, but along the way he showed us all what it means to be ‘Chad Tough’ and inspired our community to work together to fight this devastating disease. Chad’s family is working to turn this tragedy into a positive so other families do not have to experience what they went through. This resolution establishing May 17th as National DIPG Awareness Day is one step in the battle by helping to educate the public and ensure critical funding for research and treatment so we may one day find a cure.”

Dingell’s resolution aims to raise awareness and support efforts by the Carr family, who launched the Chad Tough Foundation in 2015 in honor of Chad and his battle with DIPG. The Chad Tough Foundation supports pediatric brain tumor research and studies nationwide. The resolution, if passed, would officially establish a national “DIPG Awareness Day” on May 17 to raise awareness for the disease, which is responsible for the most pediatric brain tumor deaths each year and has maintained one of the lowest survival rates.

“For years DIPG has been held to the side by our national efforts in healthcare and cancer research. There is always more we can do to raise awareness and commemorate the young lives devastatingly lost because of DIPG,” said Knight. “There is nothing more devastating to a parent than knowing there is nothing you can do to resolve pain and suffering of your child. As a parent, we need to do all we can to make sure children’s health issues are a priority for our communities and have the support of our government. Children and families deserve our support. With the passage of H. Res. 69, awareness will be established and more resources will be available for education and research for a cure.”

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. In fact, the median survival time for children diagnosed with DIPG is only nine months. Despite its prevalence, the cancer has not garnered significant attention from the media, government agencies, or research investors, and as a result parents are regularly told there is nothing outside of palliative care they can do for their children. This bill would help change this by shining national attention on DIPG and urging the National Institute of Health to adjust its criteria for considering grants so that research into diseases like DIPG can receive adequate funding.

“Today we honor the children and families who have been impacted by DIPG, a particularly insidious form of brain cancer that has stolen too many young lives,” said Speier. “That is why I am urging my colleague to pass H. Res. 69 to establish May 17th at National DIPG Awareness Day. We must educate the public about the impact of this horrendous disease and the need for more funding for research and treatment of the children impacted by DIPG, and we must provide better support for them and their families.”

H. Res 69 is cosponsored by a bipartisan group of 18 Members of Congress.