āJust Say It!āāA Local Momās National Campaign for DIPG Awareness
August 17, 2015, Santa Clarita, CAāJanet 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.Ā Pennsylvania followed suit in this leadership in 2015, declaring Feb. 22 to be DIPG Awareness Day.Ā 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. Ā 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.Ā āIām dedicating this one to my son Jackāitās his seventh birthdayāand to the little ones fighting right now to stay alive as their families watch on, helplessly.ā 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.
āAlmost every case of terminal pediatric cancer on the news this last year has been DIPG, but do you know that?āNo, no one will say it.Ā The āRun for a National Day for DIPGā 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 familyās lives, with very little hopeālargely in silence!Ā Ā DIPG represents the problem besetting ALL childhood cancers; no matter how many cumulative deaths, or regularity of incidence, the disease is marginalized as ārareā and thus receives inadequate research funding, considering the 0%-survival rate for DIPG.Ā How many more have to die for them to be a priority?Ā 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; thatās why Iām running for a National Day for DIPG,ā says Janet Demeter, founder of Jackās Angels Foundation, a local charity that began its activities in 2013 to promote awareness and research for DIPG.Ā In 2013 the DIPG Research Fund at Childrenās Hospital Los Angeles was opened, for which the charity continues to raise awareness and funds.
The Run for DIPG continues September 6th in Los Angeles, and then September 12th in Sacramento as part of the āKids Ride Nationwide for Childhood Cancer Awarenessā rally at the State Capitol, and then 9/18(tba) in Washington DC in a circuitous route around the city beginning at the Capitol.Ā Her trips to Sacramento and Washington DC will be documented for future publication.Ā For more information about this campaign, running routes, Jackās Angels, or to sponsor running miles, visit www.jacksangels.org at the EVENTS and NEWS pages.