U.S. Rep. Steve Knight, R-Palmdale, has announced his commemoration of Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day with a Special Order. His colleagues, Rep. Jackie Speier, CA-14, and Rep. Debbie Dingell, MI-12, also joined Rep. Knight in recognition of the awareness day, and called for action on H. Res 69.
“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 Representative Steve 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.”
H. Res. 69, introduced by Knight on January 30, 2017, would support expanded research for treatments and care for DIPG. Knight’s resolution renews an effort that the Congressman led last year with Janet Demeter, an Agua Dulce resident who lost her son Jack to DIPG in 2012. After his passing, Demeter founded an organization called Jack’s Angels, which promotes funding for scientific research, raises public awareness, and supports children afflicted with DIPG. 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.
“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 Representative 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.”
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. Rep. Knight’s 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.
“DIPG is a devastating disease that no family should have to experience,” said Representative 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 a 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.”
H. Res 69 is cosponsored by a bipartisan group of 18 Members of Congress, including Representative Jackie Speier (CA-14) and Representative Debbie Dingell (MI-12). The resolution has been referred to the Subcommittee on Health and the House Committee on Energy and Commerce. For more information on DIPG and how to get involved with Jack’s Angels, visit http://jacksangelsfoundation.com.