Brain tumors are the leading cause of cancer-related death in children, yet one of the very least-funded areas of cancer research. DIPG is almost exclusively pediatric, with the poorest survival rate in over 35 years of clinical record. A regular frequency of children are diagnosed every year, and a regular number of families are told there’s nothing they can do to avoid death. The answer to the question of “why” more hasn’t been done for them in all this time is always the same; “…the ‘numbers’ aren’t great enough for research investors.” Meanwhile, the Federal Government only gives 4% of the funds designated for cancer research to pediatric cancer research as a whole. We support the DIPG Research Fund at Children’s Hospital Los Angeles, our local/regional Children’s Research Institution with a strong neuro-oncology program. This fund is under the direction of Dr. Girish Dhall, Director of the Neural Tumors Program. It is our goal to raise $1M for this fund, and to encourage the formation of such funds at every Children’s Research Institution in the US. The creativity of our scientists working in the field of pediatric brain tumors, is in dire need of funding, everywhere.
Help us to make a commitment to our children, that by our actions and words, the value of their lives is given top priority. Tell your representatives in Congress and the National Cancer Institute what your priorities are.
Our mission is to improve awareness for DIPG, one of the most devastating pediatric malignancies with virtually no survivors, the urgent need for research, and to support the afflicted. The foundation’s beginnings were inspired by the love and support our local communities of Agua Dulce, Acton, and Santa Clarita, California, from the diagnosis 10/28/2011, of James-William “Jack” Demeter, with Diffuse Intrinsic Pontine Glioma, or DIPG. Though cancer is the leading cause of death in children after accidents and injury, only 4% of the National Cancer Institute’s annual budget for cancer research benefits children’s cancers as a whole. We are committed to affecting change in the experience of a family receiving a DIPG diagnosis for their beloved child, that there be active research and hope for survival. Erin Griffin, the beautiful girl in this video sadly passed away from DIPG September 2014. Dr. Charlie Teo, internationally renown neurosurgeon, expresses that the lack of funding for research is truly the only barrier to our making progress in treating brain tumors:
WHY IS AWARENESS SO IMPORTANT? Many do not know that brain tumors are the leading cause of cancer-related deaths of our children in this country, and that pediatric cancer research is not adequately supported by the national budget for cancer research through the National Cancer Institute, with a meagre 4% going to pediatric cancer research as a whole. There is an uncanny resistance to this discussion of this within the Federal Adminstration, and media circles. DIPG is the perfect example of a pediatric cancer that is marginalized as a “rare” or “orphan” disease, although it is responsible for the majority of pediatric brain tumor deaths annually. What is defined as “research funding” within the pharmaceutical industry is not entirely transparent, either, and subject to change for the convenience of investors. There has been no progress in the survival of pediatric brain tumors in over 40 years, according to the National Brain Tumor Society, and the field is urgently in need of support. With regular frequency, for decades, children have been dying of brain tumors with little being done to research the causes and conditions, with windy arguments made for investors and numbers, completely inadequate in terms of human value. While we have developed many life-saving therapies for adults, little is done, in comparison, for our world’s most precious commodity: our children.
Our happiest accomplishment of 2013 is the “for Jack” DIPG research fund at Children’s Hospital Los Angeles, and thus our campaign to ‘Count to a Million!’ –continues, as does our desire to see such a research fund at every major children’s research institution neuro-oncology clinic in the US. Please join us in our attempt to be supportive to those families and dear children who are diagnosed with DIPG, in their walk down this road. Jack lived 9 months past his diagnosis date, the median survival time for DIPG. Please consult the “About DIPG” page for more information about this illness.
Donating to Jack’s Angels supports DIPG research at Children’s Hospital Los Angeles, programs like Project Angel Box and our community programs and events for children. Donations specified for a purpose will be honored. Currently we have no sponsors and are solely dependent upon community and volunteer support. It costs money for any business to survive; we appreciate support for our organization’s activities. It makes fundraising for research and outreach to the afflicted possible. Thank you for your consideration, and your generosity.
“We were told, ‘…there’s nothing we can do; we don’t know the cause, and we can only provide temporary relief with radiation; no chemotherapies have changed the terminal outcome…’, and yet, no one was taking data from us. No samples, no testing, no forms, no nothing. We got an enormous book from CureSearch of forms, that I think was standard for any child diagnosed at the hospital with some form of cancer, but nothing that addressed the urgent need for research, real research… This is an UNACCEPTABLE REALITY. All of our research hospitals across the country ought to have data programs for the families to have the opportunity to contribute their life history/lifestyle/genetic information; we could be actively looking for the “non-existent” common denominators of DIPG. All research centers ought to have the advanced genetic testing/data-collaboration capability. We have the technology; God knows the doctors would like to be able to do more. And as more and more families suffer from DIPG, it won’t be long before the status quo’s unacceptability is too strong in our collective consciousness to ignore. This is now my personal mission.” –J. Demeter, Jack’s mom