Jack's Angels Brings DIPG Awareness to our Nation's Capital for Childhood Cancer Awareness Month

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The most lethal pediatric brain tumor DIPG is marginalized, like most childhood cancers, as rare and thus undeserving of research funding. Jack's Angels Foundation is determined to raise awareness for the fact that our children's lives do not appear to be coming first in our current system of cancer research investment.

Those diagnosed with DIPG face imminent death and their families face the inevitable and painful loss of a beloved child. There has been no progress to this effect in decades.

Jack’s Angels Foundation takes on the first DIPG Awareness run in Washington D.C. at 4pm on Wednesday, September 17, to honor Childhood Cancer Awareness Month. Little Jack, the foundation’s namesake, would have been 6 years old had he not been afflicted with DIPG, an invariably terminal pediatric brain tumor responsible for 80% of pediatric brain tumor deaths each year.* The runner will wear angel wings to signify the probable fate that DIPG children currently face, carrying a sign with messages about children’s cancer and DIPG. Jack’s Angels Foundation, of Santa Clarita, CA, initiated and continues to support the DIPG research fund at Children’s Hospital Los Angeles, with the long-term goal of initiating and/or supporting such a fund at every U.S. children’s research institution with an active neuro-oncology program.

Jack’s Angels is a public charity dedicated to awareness, support, and research for diffuse intrinsic pontine glioma, or DIPG, one of the most deadly pediatric malignancies. Brain tumors are the leading cause of cancer-related death in children yet remains one of the least-funded areas of cancer research. Currently, only 4% of the National budget for cancer research is applied to pediatric cancer research. “We hope that raising awareness to this fact will help enough people realize how unacceptable a reality this is for so many of us; those diagnosed with DIPG face imminent death and their families face the inevitable and painful loss of a beloved child. There has been no progress to this effect in decades,” states Janet Demeter, Jack’s Angels founder.

The DIPG Awareness Run and Walks in Washington D.C. on Wednesday, September 17 at 4:00pm, and Saturday, Sept. 20th, at 2pm and again at 6:30pm. The run on the 17th starts and finishes at the Capitol Building, passing the White House and many of the City’s monuments in support of Childhood Cancer Awareness Month (declared by President Obama in September of 2010), and specifically for DIPG. On Sept. 20th they will start walking at 2pm from the White House and finish at the National Stadium for the “CureFest for Childhood Cancer” Welcome Event, and then begin the return to the White House at 6pm, to arrive in time for the Vigil for Childhood Cancer at 7:30. (http://www.curefestdc.org ) Janet Demeter, Jack’s Angels founder, explained, “We hope that increased awareness of DIPG will affect change in our prioritization of funding, not just for those who suffer from DIPG but all those children who’s cancers are marginalized as rare and irrelevant because of the numbers. DIPG is a good example because it is a common pediatric brain tumor, and responsible for so many deaths with no survivors; marginalizing it this way is not acceptable no matter how you look at it."

Ms. Demeter has appointments with the offices of Congressman Michael McCaul(TX-10), Chairman of the Congressional Caucus for Childhood Cancer, ‘Buck’ McKeon (CA-25), her congressional representative, the offices of Senators Feinstein and Boxer. When asked what she expected to accomplish in these meetings, she responded, "I hope to learn more about how our system works and where the loopholes are that bypass our children's needs, ultimately to have insight into what the next steps are for affecting real change. The first step is always awareness; we would like to see a national DIPG Awareness Day for all of these beautiful children who have died, and those who continue to suffer.”

Jack’s Angels’ walks and runs for DIPG awareness are free and do not solicit donations. For more information about Jack’s Angels, visit http://www.jacksangels.org, or call 661-977-3125.

*Statistical resources: The American Childhood Cancer Association; http://www.acco.org, The Lyla Nsouli Foundation for Children's Brain Tumor Research; http://www.lylansoulifoundation.org

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Janet Demeter
@JacksAngels1
since: 03/2013
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