“Chad and Jack’s DIPG Resolution”

(unofficially titled for Chad Carr of Michigan, and Jack Demeter, of California)

http://knightforms.house.gov/news/email/show.aspx?ID=QL2FAABJSRT6G

“Letter to Colleagues” by Adam Brooks (introductory letter to Resolution)      /     Resolution Text

KNIGHT INTRODUCES BIPARTISAN CHILDHOOD CANCER RESEARCH BILL 
CONGRESSMAN WORKING WITH AGUA DULCE RESIDENT TO INCREASE ATTENTION AND FUNDING FOR PEDIATRIC CANCER

(WASHINGTON, DC) – Representative Steve Knight (CA-25) introduced a bipartisan resolution on Wednesday that would raise awareness and support research for a common but little-understood form of pediatric cancer called Diffuse Intrinsic Pontine Glioma, or DIPG.

Jack Angels

H. Res. 586 would establish a national “DIPG Awareness Week” and support expanded research for treatments and care. The resolution was first suggested to Rep. Knight by Janet Demeter, an Agua Dulce resident who lost her son Jack to DIPG in 2012. Since 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.

“DIPG exemplifies the experience of childhood cancer in its deadly prognosis and lack of solutions, and the tragic but commonly heard excuse that “the numbers aren’t great enough for investors,’” said Demeter. “This Resolution gives hope for the day when no parent has to hear this, and finding solutions to these most deadly cancers is a priority.   It finally brings public light to one of the darkest experiences a child can have.”

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, 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. 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.

“Raising awareness for DIPG is long overdue, and this resolution will help bring us one step closer to ending childhood cancer once and for all,” said Rep. Knight. “Nothing hurts parents more than knowing there’s nothing they can do to keep their children from suffering. I am extremely grateful for all of the work Janet has done on this issue and look forward to bringing this cause to the national stage.”

Knight was joined by Representative Jackie Speier (D-San Francisco/San Mateo) in introducing H. Res. 586, along with six other original cosponsors. The resolution was referred to the House Energy and Commerce Committee, where it will be considered in the coming months. For more information on DIPG and how to get involved with Jack’s Angels, visit this website at https://jacksangelsfoundation.com.

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Representative Steve Knight, (R-Antelope Valley), represents California’s 25th Congressional District in the US House of Representatives, which includes the communities throughout the Antelope, Santa Clarita and Simi Valleys.