EVENT: 2015 CureFest DC
We are completely volunteer-powered and motivated by the continual stream of DIPG-diagnosed children and their families learning that there are no therapies developed for them because their numbers are insignificant to research investors. We believe that in the United States of America, our tax-dollars allotted to cancer research ought to benefit those in most need of such research, our children. Cancer is the leading disease-cause of death in children yet is allocated only 4% of that National Budget. Change only happens if we demand it. Our decisions about cancer research (NCI) funding ought to be motivated first by saving lives, not corporate profits which, though practical, are secondary to our country's most precious resource: our children. Why DIPG? It is a very good example of a childhood cancer marginalized as "rare" despite it's 12% incidence of pediatric brain tumors, and culpability for 80% of pediatric brain tumor deaths. It has had no survivors on clinical record for over 35 years. Since brain tumors are the leading cancer-related cause of death in children, we feel it is absolutely unconscionable that research for this concern is so ridiculously underfunded with regard to the suffering incurred over decades. We raise awareness with activism and advocacy, such as Curefest, and DIPG Awareness Runs. Our annual event is a music and art festival for children where people learn about childhood cancer and DIPG by our displays, and the arts and education for children is supported and celebrated, in memorial to Jack (08/30/08--07/30/12), former resident of Santa Clarita California. We are also forming partnerships with other local foundations to raise awareness for pediatric cancer. Our most treasured accomplishment is the DIPG Research Fund at Children's Hospital Los Angeles, and we wish to encourage the initiation of such funds at all children's research institutions around the country--and world--with a strong neuro-oncology research group. We are also extremely grateful that our CA State Assemblyman Scott Wilk had the Legislature pass ACR 151 declaring May 25-31 DIPG Awareness Week in the State of California. We are going to Washington in part to promote our Petition calling for a National DIPG Awareness Day, and for the inequities in funding for Childhood Cancer, and it can be found at: www.credomobilize.com/p/DIPG. Our operations are solely reliant on donations, strictly by "wing and prayer" policy. We are a collaborative organization and encourage supporting other like-minded foundations and cancer-related charities for children. Please support our activities spreading awareness about DIPG and the inequities in research funding for our children diagnosed with cancer! Thank you!