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WASHINGTON, DC - Today, Congresswoman Debbie Dingell (D-MI) commemorated Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day by introducing a resolution with Rep. David Joyce (R-OH) to establish May 17th as DIPG Awareness Day and to support expanded research for treatments and care for DIPG. Rep. Dingell’s constituent, five-year-old Chad Carr of Ann Arbor, lost his battle with DIPG in 2015.

“No family should have to experience the devastating disease that is DIPG,” said Rep. Dingell. “In Michigan, we witnessed the strength and courage of the Carr family as five-year-old Chad Carr lost his battle with this rare form of pediatric brain cancer. Along the way Chad inspired our community to work together to fight this devastating disease, and his family continues to fight so others don’t have to experience this pain. 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.”

“I’m proud to join Congresswoman Dingell in introducing this bipartisan resolution to increase awareness of one of the deadliest forms of pediatric cancer and call for increased funding to support the research needed to fight it,” said Congressman Joyce. “We must continue to work together on behalf of every child, parent and family affected by this devastating disease until no child has to hear the heartbreaking words ‘you have cancer’ ever again.”

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.

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.

The full text of the resolution is available here. 

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