“They were told it was a ‘rare’ brain tumor, and that nothing had been done for decades, in research, because the ‘numbers’ weren’t great enough for investors. After his death, they came to learn that DIPG is one of the more common pediatric brain tumors(12% incidence), and responsible for roughly 80% of pediatric brain tumor deaths yearly… and that only 4% of the National Budget for Cancer Research is for pediatrics, though cancer kills more children than any other disease…”–About Us
“JUST SAY IT!” Campaign for DIPG Awareness Day has begun!
After decades of obscurity, 0% survival rate, feelings of insignificance and agonizing grief at diagnosis for families, and thousands of cumulative deaths, it is time. It’s time for DIPG to come out of the dark.
PETITION FOR A NATIONAL DAY for DIPG Leaflet about DIPG
“JUST SAY IT!” –D. I. P. G.
Most of the high-profile cases of terminal cancer in the news media this year, including Lauren Hill and AJ Peterson, were DIPG; did you know it? DIPG is the great example of the inequities of research funding for childhood cancer; DIPG, like most all other childhood cancers, is marginalized as a “rare” or “orphan” disease, although it is responsible for the majority of pediatric brain tumor deaths each year, has no survivors in over 35 years of clinical record, and comes in the regular frequency of 200-300 diagnosed annually. 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 research 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.
Help us encourage the President to declare a National DIPG Awareness Day! We just had National Hot Dog Day for Heaven’s sake…visit the Petition for more information.
Let there be a NATIONAL DAY for DIPG Awareness 2015
DIPG is almost exclusively pediatric, with the poorest survival rate in over 35 years of clinical record. Brain tumors are the leading cause of cancer-related death in children, yet one of the very least-funded areas of cancer research. When one poses the question as to why no effective therapies have been developed, the answer seems to be consistently that the “numbers” (200-300 per year) aren’t great enough for research investors. Meanwhile, only 4% of our tax dollars allocated for cancer research by the National Cancer Institute are designated for all pediatric research.
Help us to make a commitment to our children with our actions and words; tell your representatives in Congress and the President to make our children with terminal cancer a National Priority.
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.
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:
What is it?
Our beginnings and our MISSION
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.
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
