DIPG Awareness Week in California, May 25-31

ASSEMBLYWednesday, May 20, Santa Clarita, CA–DIPG, diffuse intrinsic pontine glioma, is a pediatric brain tumor that is invariably terminal with no progress made to that effect in over 35 years of clinical record.  DIPG is responsible for roughly 80% of pediatric brain tumor deaths annually[1], the leading cause of cancer-related death in children.  Taken from California State Assemblyman Scott Wilk’s section of The Signal on June 13, 2014, the newspaper for the  Santa Clarita Valley, he stated, “The Demeters, Jack’s story, and the purpose of the foundation were recently brought to my attention when I met Janet Demeter at a Santa Clarita Valley Chamber of Commerce dinner.  Touched by Janet’s story, I decided there needed to be a greater awareness about the debilitating illness.  I introduced an Assembly Concurrent Resolution to deem the week of May 25-31 as Diffuse Intrinsic Pontine Glioma Awareness Week..,” he continued, “DIPG has been one of the most under-researched types of brain tumors, going hand-in-hand with other childhood brain tumors’ dark history of being underfunded…”

Tweet, “National DIPG Awareness Day!” to our President 5/25-31 @POTUS

Because of the traumatic occurrence of the Santa Barbara shootings around that time in 2014, the press release didn’t hit the paper until June 13.  Therefore, May 25-31 2015 will be the first celebrated week of Diffuse Intrinsic Pontine Glioma Awareness! back-big (2) During this week, Jack’s Angels Foundation is celebrating with an Awareness Run on Monday, May 25 across the Santa Clarita Valley, to thank Assemblyman Wilk and the California Legislature, and to encourage the movement across the country to have President Obama declare a National DIPG Awareness Day.  The runner wears multicolored ribbons on angel wings to honor  DIPG children, and the run is always dedicated to the recently deceased and the fight for those to come.   As an ambassador for childhood cancer, DIPG makes a very poignant statement; despite its hopeless prognosis and culpability for so many deaths, DIPG is marginalized–like all childhood cancers–as “rare” and thus undeserving of research funding by our current system in place. The qualifying adjective “rare” has been attached to DIPG like glue, despite the fact that it is a common pediatric brain tumor, representing about 12% incidence[2] of over 170 identified varieties[3].

bib2“People can’t care if they’re not aware!”–stated quite frankly, Aimee Dickey, always 12, from Scranton PA almost a decade ago, the inspiration for “Aimees Army.”  Within the last 5 years, a critical mass of parents and families in extraordinary pain and exasperation with a system that values short-term corporate profits over children’s lives, has begun to accumulate, with foundations and medical systems from private sector donations to help the DIPG predicament, such as The Cure Starts Now, Reflections of Grace, and a number of other foundations working together as “The DIPG Collaborative.”    Though the private sector funding is a helpful and promising start,  the funding of research for children is still desperately needed.

Only 4% of our taxpayer dollars designated for cancer research go to childhood cancer research as a whole.  Long and windy arguments have been made of CMOs and CEOs of big pharmaceutical companies like Janssen, the global component of Johnson&Johnson, making billions in profit margins, math that needs no explanation.  Like clockwork, 200-300 children[4] are diagnosed each year in the United States, and, like clockwork, they all die–the majority of them within a year of said diagnosis.  Most scientists agree that discoveries in childhood cancer research, particularly the most elusive and resistant of them, would elevate our science, medicine, and understanding of biology by a quantum leap.   Our children need more than 4%, and DIPG makes a very good case for this assertion.  Most children with DIPG are fully conscious and aware of their decline until their last day.  The loss is painful enough for the family to endure, but also to be told that their children’s lives are insignificant to investors is more than a kick in the gut when they’re already down for the count.  However, this is the dark reality for them.

boysJack’s Angels Foundation is celebrating DIPG Awareness Week with the Run, Monday May 25, at 10 am in Canyon Country–Canyon Country Park, all the way to the entrance of Six Flags Magic Mountain.   All donations to the Foundation during DIPG Awareness Week will benefit DIPG research.   On Thursday, the amazing Powderpuff Football Game 5/28  kicks off at 6pm, Jorgenson Field at Vasquez High School in Acton.  Half-time of the game boasts the boys cheer squad, sure to be entertaining, and also the 2015 Angel Awards, honoring Assemblyman Scott Wilk, the Santa Clarita Valley Chamber of Commerce, Albert Einstein Academy, Vasquez High School, distinguished educators and artists, and volunteers for their contribution to DIPG Awareness and supporting Jack’s Angels mission.

Because of the support of certain schools, the SCV Chamber of Commerce, and of course Assemblyman Wilk, our local communities of Santa Clarita, Agua Dulce, and Acton have shown outstanding leadership not only for Los Angeles County, but for California and our United States.  When asked “what’s next,” by one of Jack’s Angels volunteers, Janet Demeter–Jack’s Angels President–stated, “There may be a second run that week, so I’m still working for that Day!”  All are encouraged to tweet the President for a National DIPG Awareness Day between May 25 and May 31st.  For more information about Jack’s Angels mission of support, awareness and research for DIPG, visit www.jacksangels.org.

[1]  The Lyla NSouli Foundation for Children’s Brain Tumour Research, www.lylansoulifoudation.org; [2]  The Oxford Journal of Neuro-Oncology, 2012; [3]  The Pediatric Brain Tumor Foundation, www.pbtf.us; [4]  CureSearch, www.curesearch.org

 

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