On Sunday, February 22, 2015, (2/22/2015) at 12pm, the first DIPG Awareness Run will begin across the Santa Clarita Valley. The Run starts at the entrance to Six Flags Magic Mountain, at the Old Road and Magic Mountain Parkway and the entrance to Interstate 5, proceeds south to Valencia Blvd., and then goes east past the College of the Canyons and City Hall. The run stays on this trajectory while Valencia Blvd. becomes Soledad Canyon Rd., and continues until reaching the Von’s shopping center at Sand Canyon Rd—and the entrance to the 14 freeway.
Jack’s Angels’ Program Director Janet Demeter began running for DIPG Awareness in 2014 at the First Annual Santa Colorita 5k Fun Run. The idea stuck; she tried the first City Run in Boston on June 8, 2014, and then Washington DC on September 17, 2014, in honor of Childhood Cancer Awareness Month. Both press releases for these events can be found at www.jacksangels.org, in the NEWS section, and under Programs.
This year Jack’s Angels will celebrate on Valentine’s Day(2/14/15) the 2nd Annual Santa Colorita 5k Fun Run with the “Skip for Jack!”—a skipping race for children immediately preceding the Fun-Run—to honor Jack’s memory, a little boy with DIPG who wanted more than anything to skip, and loved to play. “We were honored that the Santa Clarita Valley Chamber of Commerce invited us to be part of the Planning Committee for Colorita, making Jack’s Angels one of the beneficiaries, and to even entertain the idea of the Skip…not having the resources to create such an event ourselves, we were so happy to have the Skip be part of the Colorita Event. I have never felt so blessed to be part of a community as this. We truly have an extraordinary Chamber of Commerce. I won’t ever take it for granted,” said Demeter when asked about the “Skip for Jack!”. The event takes place Saturday, Feb. 14 from 7am-12pm. The Skip is also dedicated to Nathan Street, currently battling DIPG with the utmost bravery. Jack’s Angels Foundation hopes very much to have Nathan attend the event as guest of honor.
DIPG is a lethal pediatric brainstem tumor with no survivors, and decades without any progress in research to that effect. Like all childhood cancers, DIPG is marginalized as rare and thus undeserving of research funding, even though brain tumors are the leading cause of cancer-related death in children, and DIPG is responsible for roughly 80% of pediatric brain tumor deaths annually. In cumulative numbers, with regular annual frequency, DIPG has caused a veritable slaughter of our children and devastation to thousands of families over the years. This year the goal of Jack’s Angel’s DIPG Awareness Runs is crystal clear: Jack’s Angels is asking the President to declare a national DIPG Awareness Day, along with clusters of affected parents from around the United States and abroad.
Last May, California State Assemblyman Scott Wilk authored a Resolution for a DIPG Awareness Week, May 25-31, in the State of California. “We remain much obliged to the Assemblyman for support of DIPG Awareness; this has been a determining factor in our inspiration to take our case to the White House. DIPG families have endured for decades the following unacceptable reality; that when one asks why more research is not going on, why we don’t have more solutions or hypotheses, the answer is always the same: that there is not enough of an investment incentive for companies to invest in research; the numbers aren’t great enough to ensure a timely return in profit, so, in effect, the decision-making about where our research dollars go is not representative of our interests. It is bypassed somehow. Only 4% of the National Cancer Institute’s budget for research goes to pediatric cancers as a whole… Awareness is powerful, and we are responsible. Not everyone is called to take action, but for those of us who are, we must. So, I run with angel wings made of ribbons for DIPG children who have died, and a few who are bravely fighting to live. They can’t speak, but a picture takes a thousand words. I hope that the run gets even a little attention. They more than deserve it. I’m running for them.”
When asked how these runs could actually help encourage the President to declare a National DIPG Awareness Day, Demeter replied, “I can only hope that the attention from the Awareness Runs, cumulatively with the exposure of the information on childhood cancer and DIPG that I repetitiously send to Senators Feinstein and Boxer, Congressmen McCaul and Van Hollen of the Congressional Caucus for Childhood Cancer, President Obama, and our new Congressman Steve Knight, who last year was the CA State Senator who helped Assemblyman Wilk with the Resolution, that with the demands of all the DIPG parents across the country, all of that together–in this way one small act can have a huge effect simply by being an integral part thereof. I don’t pretend to personally have any great power, but I do believe in persistence, and collaboration. There is nothing we can’t do together that is really important, especially for our kids.”
When asked what more runs are planned for 2015, the schedule was not yet fixed. “I’d like to go to Washington D.C. again in September, and Sacramento in May to celebrate the work of the State Assembly—as well as Los Angeles. Other hopes are New York and San Francisco, and Seattle. I’ll need to find some help for this, though!” More will be posted on the NEWS page at www.jacksangels.org in the upcoming weeks.