Local Mom’s National Campaign for DIPG Awareness

BANNERJSI“Just Say It!”—A Local Mom’s National Campaign for DIPG Awareness

 

August 17, 2015, Santa Clarita, CA—Janet Demeter is running on the heels of good fortune, the local leadership of our very own 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.  Janet lost her son Jack to DIPG, diffuse intrinsic pontine glioma, an almost exclusively pediatric brain tumor responsible for most of the brain tumor deaths each year in children.  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 to declare a DIPG Awareness Day, to continue this California leadership in the quest for a National Day.

“Almost every case of terminal pediatric cancer on the news this last year has been DIPG, but do you know that?—No, no one will say it.  The ‘Run for a National Day for DIPG’ is, in part, an experiment to observe the power of an individual, and 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—largely in silence!   DIPG represents the problem besetting ALL childhood cancers; no matter how many cumulative deaths, or regularity of incidence, the disease is marginalized as “rare” and thus receives inadequate research funding, considering the 0%-survival rate for DIPG.  How many more have to die for them to be a priority?  Only 4% of the National Budget for cancer research benefits pediatric research; there needs to be a national awareness of this for change to occur; that’s why I’m running for a National Day for DIPG,” says Janet Demeter, founder of Jack’s Angels Foundation, a local charity that began its activities in 2013 to promote awareness and research for DIPG.  In 2013 the DIPG Research Fund at Children’s Hospital Los Angeles was opened, for which the charity continues to raise awareness and funds.

Journalism project for Childhood Cancer Awareness Month

Journalism project for Childhood Cancer Awareness Month

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Sponsor Miles

The Run for DIPG continues September 6th in Los Angeles, and then September 12th in Sacramento as part of the “Kids Ride Nationwide for Childhood Cancer Awareness” rally at the State Capitol, and then 9/18(tba) in Washington DC in a circuitous route around the city beginning at the Capitol.  Her trips to Sacramento and Washington DC will be documented for future publication.  For more information about this campaign, running routes, Jack’s Angels, or to sponsor running miles, visit www.jacksangels.org at the EVENTS and NEWS pages.

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