Help Fight DIPG

James-William "Jack" Demeter was diagnosed from an MRI scan with DIPG  in October of 2011, after suffering a sudden increase in lack of coordination, slurring, and weakness.  As with most families, it was a terrifying and lonely experience.  We were told DIPG was invariably terminal, and there was nothing they could do to change it. Our options were radiation therapy, which had shown results for some patients in delaying the fatal progression of the tumor.  Chemotherapies had shown small margins of prolonging life, but at the cost of the quality of that time.  Unfortunately, the only way Jack's experience could benefit research was autopsy.  There were no forms to fill out, no data searches going on.  There was no active research we could participate in to actually find the elusive common denominators of this disease.  Jack was only three. We would like to see this experience eventually change for DIPG children and their families.  I wish I could tell you what Jack's experience was; he did meet with his angels before he died.  They told him he had something very important to do.  He told us he didn't want to go.  He was extremely uncomfortable, but complained little.  We had to watch him decline until his respiration could no longer function...he missed his fourth birthday by one month.  We came to realize that DIPG is not a rare brain tumor, but a fairly common one for children, representing about 12% of incidence.  However, this one is also responsible for most of the brain tumor deaths in children each year.  As brain tumors are the leading cause of cancer-related death in children, DIPG is hardly irrelevant.  Every doctor who has studied this disease, that I have observed, spoken to, or read, agrees that it is the worst pediatric malignancy.  However, only 4% of our national budget for cancer research benefits childhood cancers as a whole.  Something is definitely amiss in our system; corporate profit margins are preceding our children's lives in priority.  Please help us raise awareness to this fact, so that together, we can begin to affect change.  Thank you!