Welcome, and thank you for visiting our site! August Newsletter
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. Children’s cancer research is markedly underfunded, brain tumors being the leading cause of cancer-related death in children, and DIPG being responsible for 80% of pediatric brain tumor deaths.
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. Current events can be found above under the “Help Fight DIPG” logo.
Our two-sided (1/2 page size) informational brochure can be downloaded here: insert
Our Mission: Awareness, Support, and Research for DIPG
1. Support RESEARCH for DIPG, a pediatric brainstem tumor that has seen no progress in its terminal nature in over 30 years.
Median survival time is 9 months. We support the DIPG research fund at Children’s Hospital Los Angeles, our local children’s research institution here in Southern California. While clinical trials and pharmaceutical concerns have some sources in funding, the infrastructure of our children’s research institutions rely on philanthropic contributions for funding. Of the National Cancer Institutes funding of cancer research, only 4% goes to pediatric cancer annually, much less pediatric brain tumors. We hope to encourage the collaborative aspect of scientific research, and raise awareness for newly developed research protocols specific to DIPG, needing financial support.
2. Raise AWARENESS for DIPG by supporting the arts and education for children locally, and in our fundraising campaigns.
Visit the PROGRAMS section of the site to see what we have begun, and what we are planning. These projects are volunteer managed and dependent upon local contributions. “Running for Jack” is a new unofficial program for raising awareness!
3. SUPPORT the quality of life of DIPG patients and their families, and increase hope for survival from a DIPG diagnosis in our support of research. We are blessed in our area with the Michael Hoefflin Foundation, and Justin Time Children’s House, and We Can pediatric brain tumor network as support systems for those afflicted. Visit our Resources page, as we are updating if often. We support also the advancement of research protocols specific to DIPG, as well as the advancement of non-toxic therapies, for the future, as an available supplemental therapeutic choice for families.
“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