Janet Demeter of Agua Dulce took her seven-year fight to Capitol Hill on May 1, 2019 with a band of parents advocating for pediatric cancer research. After losing her 3-year-old son, Jack, to DIPG, diffuse intrinsic pontine glioma, which is the deadliest of pediatric cancers, she founded Jack’s Angels to bring patients closer to treatment by removing the disease from total obscurity. There has been no change in either treatment or prognosis since Neil Armstrong’s daughter, Karen, died of it in 1962.
“My main motivation for working for this cause has always been the experience we had, out of the gate, hearing that there were no solutions for my son because ‘the numbers aren’t great enough for investors’ – which was a clear message at the time,” Demeter says. “My son’s life had no value to the medical research system in place. I didn’t know that it was one of the most common and deadliest forms of childhood brain cancer.”
The DIPG Advocacy Group held meetings with both members of the House of Representatives and the Senate, bringing information and support from constituents and evidence of the vast number of affected families across the United States. House Leadership and members of the Energy and Commerce Health Subcommittee are especially important, as these members decide the fate of H. Res. 114, which indicates the need for greater research funding for pediatric cancers in general.
Thanks to pressure from Demeter and others, May 17 has been named Brain Tumor Awareness Day.
Approximately 200-400 children are diagnosed with DIPG annually in the United States and it is considered a rare disease, as is every form of childhood cancer. As the leading cause of death in children in the United States after accidents and injuries, cancer strikes all ages, but brain cancer tops the list for pediatric cancer mortalities – and DIPG is responsible for the majority of those deaths.
For more information, visit DIPGadvocacy.org or JacksAngels.org.