Clearly there was something wrong; I’d entered into a terrible world where the system had no value for my child's life, and the powers that be were resisting any kind of national discussion about it.
ALEXANDRIA, Va. (PRWEB) December 04, 2018
The DIPG Advocacy Group, an association of individual advocates and foundations for children with cancer, has made its way to Washington DC this week in support of H. Res. 69, the DIPG Awareness Resolution, originally written by parents for children with cancer and their families with Congressman Steve Knight (R-CA-25) and cosponsored by Congresswoman Jackie Speier (D-CA-14). The Resolution asks that pediatric and high-mortality rate cancers receive greater consideration in the research grant process with both public and private sources. It also raises awareness to the deadly statistics of DIPG, pediatric brain cancer, and the need for greater pediatric cancer research in general. May is Brain Tumor Awareness Month, and the Resolution designates May 17 as DIPG Awareness Day; brain cancer is the leading cause of childhood cancer death in the United States.
DIPG, diffuse intrinsic pontine glioma, is arguably one of the deadliest pediatric diseases with a dismal less-than-1% survival rate and average age of incidence between 5 and 9 years old. Contrary to historic media exposure of the disease as being an "extremely rare brain cancer", it's actually the second most common pediatric brain tumor, and brain cancer is one of the more prevalent forms of cancer in children. It’s also the deadliest, claiming more lives than any other childhood cancer; DIPG has the poorest prognosis of all and is responsible for the majority of pediatric brain cancer deaths annually in the US.. "The worst part," according to Janet Demeter, founder of DIPG Advocacy Group and president of Jack's Angels Foundation in Santa Clarita, CA, 'is that there has been no change in standard treatment nor terminal prognosis since Neil Armstrong's daughter died of it in 1962."
Also making the trip to Washington are Elizabeth Psar and her son William of Julia Barbara Foundation in Knoxville, TN, and Paul Miller, long-time childhood cancer advocate and volunteer for St. Baldrick’s Foundation from Littleton, CO. Advocates from New Jersey, Pennsylvania, Florida, Virginia, Rhode Island, New York, among other states are actively supporting them from afar, sharing a member-created online petition (Jodi Jacobs, Canandaigua NY) and a Sound-OFF to Congress Campaign on Twitter. The goal of the group is to get a House vote on the bill before the end of the Congressional Session. While it has remained in committee with no movement for 3 years, roughly 1200 more children have died of DIPG, and thousands more from other childhood cancers.
Demeter lost her son Jack to DIPG in 2012; her exploration into advocacy began with a trip to Washington DC in 2014 during the #morethan4 movement, an online parent-protest of the meager 4% of the annual NCI research budget allotted to all childhood cancers combined. She then became aware that this particular disease, diffuse intrinsic pontine glioma, exemplified in a powerful and horrific way the tragedy that faces everyone in the childhood cancer community: the lack of viable solutions for their kids.
Demeter explains, "For DIPG, it was an utter lack of hope. I began to realize the disconnect between the medical research system and that of medical care, first in hearing that there was nothing to save my son’s life because 'the numbers aren’t great enough for investors.' In 2014 then NCI Director Varmus said that the issue of the 4% would simply not be discussed. Clearly there was something wrong; I’d entered into a terrible world where the system had no value for my child's life, and the powers that be were resisting any kind of national discussion about it."
Currently the bill has nearly 50 cosponsors, has the support of the Oncology Nursing Society, Children’s Cancer Therapy Development Institute, the Children’s Cause for Cancer Advocacy, and the Children’s Brain Tumor Project, and conferring experts Dr. Michelle Monje of Stanford University and Dr. Adam Green at the University of CO, Denver approved the language of the bill. This year, 31 States passed a legislative Resolution or gubernatorial Proclamation for DIPG Awareness Day May 17, an overwhelming show of national support among parents.
Why DIPG? “...it exemplifies in a powerful way the marginalization of childhood cancers and lack of funding for research. Every child’s life deserves hope, but there is none for these children with DIPG. The first iteration of this bill we used to call, 'Moonshot for Kids.' Most experts familiar with the disease agree that, if they could find the cure to this one, they might just find the cure to brain cancer. I know they can if science put a man on the moon 50 years ago.”