DIPG parents must watch and wait in terror as their child disappears from this world knowing that to our current system they don’t matter. How many more of them have to die before they are a priority? This is why I’m running for a National Day.
For Immediate Release:
Santa Clarita, August 25, 2015—September is Childhood Cancer Awareness Month, as first declared by President Obama in 2010, and the yearly tradition of CureFest in Washington DC continues this year on September 19th and 20th as thousands in the childhood cancer community join together on the National Mall to raise awareness for the urgent need for more cancer research for our Nation’s most precious asset: Our Children. For children in the United States, cancer causes more deaths than any other disease, yet only 4% of our National Budget for Cancer Research, managed by the National Cancer Institute, target childhood cancer research as a whole. Brain tumors are the number one cause of cancer-related deaths in children, and DIPG, diffuse intrinsic pontine glioma, leads the pack with roughly 80% of those deaths, and no survivors in over 35 years of clinical record. Pediatric brain tumor research is one of the least-funded areas of cancer research.
Like most all other childhood cancers, DIPG is marginalized as “rare”, with an incidence of 200-300 new cases each year–despite the regularity of this frequency, and the invariable death sentence that accompanies diagnosis. Yet DIPG is quite common among pediatric brain tumors, responsible for roughly 12% incidence, and is “the one you don’t want to get.” In fact, most of the high-profile cases of terminal pediatric cancer in the news this year have been DIPG, but did you know it? Lauren Hill, a collegiate basketball hopeful whose life was cut short just as she took that court, and who raised $2M for The Cure Starts Now, a DIPG-specific charity that funds research, was honored by public demand at the ESPY Awards for her bravery. Was DIPG ever mentioned? No. The silence surrounding DIPG is uncanny and extremely unsettling to those who know its devastation.
For Janet Demeter, founder of Jack’s Angels Foundation for Awareness, Support and Research for DIPG in Santa Clarita, CA, and activist for DIPG and childhood cancer awareness, the motivation for her work is exactingly clear. “For too long, parents have learned that no live-saving therapies have been developed for their DIPG diagnosed child because ‘the numbers’ aren’t great enough for investors. With brain tumors being the leading cause of cancer-related deaths in children, and DIPG being responsible for the majority of them, DIPG is hardly irrelevant. It’s a completely life-decimating experience for those who know it,” she states, as she explains her devotion to a campaign for a National Day for DIPG called, “Just Say It!”, the words themselves reminiscent of the silence around DIPG. “It’s as if it [DIPG] were the great embarrassment, an indicator that our system caters to corporate profits for investors in research before our children’s lives, which now number in the thousands, and more coming daily. DIPG parents watch and wait in terror as their child disappears from this world knowing that to our current system they don’t matter. How many more of them have to die before they are a priority? This is why no one wants to talk about DIPG. This is why I’m running for a National Day.”
Janet Demeter is running on the heels of good fortune, as the local leadership of CA State Assemblyman Scott Wilk who, touched by the story of Jacks Angels Foundation, authored ACR151 which passed the California Legislature in June of 2014, declaring May 25-31 to be DIPG Awareness Week in California. Pennsylvania followed suit in this leadership in 2015, declaring Feb. 22 to be DIPG Awareness Day. Four DIPG Awareness Runs are being planned for the upcoming month, calling for a National Day for DIPG; the first in Santa Clarita CA, on Sunday August 30 at 10am, following a course from Canyon Country Park to Central Park. “I’m dedicating this one to my son Jack—it’s his seventh birthday—and to the little ones fighting right now to stay alive as their families watch on, helplessly.” She is also actively petitioning Governor Jerry Brown, with the help of her Assemblyman, to make a Proclamation for DIPG and to continue this California leadership in the quest for a National Day.
As for her attempt to communicate with the President, she explains, “I actually received some extremely gracious and kind-hearted replies…however there was still no mention of DIPG. Keeping it quietly dissolved in the issue of childhood cancer, however, serves neither…we must be specific in order to elucidate the real experiences of people NOW, bringing new meaning and awareness to childhood cancer. I hope he at least keeps DIPG in mind when he makes this year’s Proclamation…but I’m going to keep running until we get a Day.”
The Run for DIPG continues September 6th on the beaches of Los Angeles, followed by September 12th in Sacramento as part of the “Kids Ride Nationwide for Childhood Cancer Awareness” rally at the California State Capitol, and culminating in the Run September 18 in Washington DC, after the Summit for the Congressional Caucus for Childhood Cancer in a circuitous route around the city. Demeter traditionally dons angel wings with colored ribbons and halo for DIPG children, symbolic of their current fate. The entire journey will be documented for future publication. Demeter explains, “’Just Say It!’ is in part an experiment to observe the power of the individual in our country, as well an attempt to speak out for those who are currently unable to do so about a disease that is decimating family’s lives, with very little hope, and in silence.”
For more information about this campaign, running routes, Jack’s Angels, or to sponsor running miles, visit http://www.RUNforDIPG.org, or visit Jack’s Angels main website http://www.jacksangels.org.
The American Childhood Cancer Organization http://www.acco.org, the American Brain Tumor Association http://www.abta.org, Pediatric Brain Tumor Foundation http://www.pbtf.us, the Lyla NSouli Foundation http://www.lylansoulifoundation.org, the Oxford Journal of Neuro-Oncology 2012, “Focus on Childhood Cancer”. Conference, NIH Bethesda, MD, Feb. 14, 2014.