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KNIGHT, SPEIER REINTRODUCE DIPG RESEARCH, AWARENESS BILL

Tuesday, January 31, 2017

SVC News - Representative Steve Knight, CA-25, and Congresswoman Jackie Speier, CA-14, reintroduced a bipartisan resolution on Monday that would raise awareness and support research for a form of pediatric cancer called Diffuse Intrinsic Pontine Glioma, or 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 introduction of the 2017 National DIPG Awareness Resolution is not only an important statement for diffuse intrinsic pontine glioma, the deadliest pediatric brain cancer, but also for the childhood cancer community, as DIPG exemplifies the unfortunate reality that so many children and their families face each year, for decades now,” said Janet Demeter. “Families of children with deadly cancers like DIPG are continually forced to accept that they must watch their child die a horrible death because their annual numbers don’t represent enough of an incentive for research, in a country where we say curing cancer is a priority. I couldn’t save my son, but seeing this day arrive is truly a blessing. The Resolution asks that saving lives be a priority in the system; it asks that our children be a priority again. I’m extremely grateful to Congressman Knight and his staff for recognizing this tragedy and helping to bring it to the national stage.”

H. Res. 69 would support expanded research for treatments and care for DIPG. The resolution would also 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.

“I am delighted to join Congressman Knight once again in the continued fight to establish a National DIPG Awareness Day to call attention to the devastating consequences of this particularly insidious form of brain cancer, one that is tantamount to an immediate death sentence once a child is diagnosed. DIPG tumors are inoperable, incurable, and take the lives of most children within a year of their diagnosis,” stated Representative Speier. “Despite the horrific effects of this form of cancer, DIPG receives among the least money of the far too low amount of money earmarked for childhood cancer research, meaning that we have seen little in new treatment options or progress. This can and must change. A major part of that change will come from educating everyone about the impact of this horrendous disease, and the need for more funding for research and treatment of the children impacted by DIPG as well as 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.

“Nothing hurts parents more than knowing there’s nothing they can do to keep their children from suffering,” said Rep. Knight. “This resolution would help bring much-needed awareness to a tragic reality and could bring us one step closer to ending childhood cancer once and for all. 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.”

H. Res 69 was introduced on Monday and is cosponsored by a bipartisan group of 10 Members of Congress. The resolution currently awaits committee assignment. 

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