When Janet Demeter lost her son, Jack, to DIPG on July 30, 2012, she began a campaign to advocate for children battling cancer in the United States.
DIPG, or diffuse intrinsic pontine glioma, represents a horrific death sentence for a young child. A malignant, diffusely infiltrating brain tumor, DIPG develops in the pons area of the brainstem, which is responsible for neural transmissions to and from the brain to the body, and is also in perhaps the most protected area of the body. DIPG is resistant to conventional medical chemotherapy treatments, and is inoperable. The median survival time, post-diagnosis, is nine months with radiation treatment, and long-term survival prognosis is less than 1 percent. Parents are routinely told to go ahead and make memories, and enjoy last moments with the child. Neil Armstrong’s daughter died of DIPG in 1962, and today’s standard treatment protocol and terminal prognosis have seen no change since then.
“It was a hope-obliterating experience … and to discover that there has been insufficient research activity for decades, literally, because ‘the numbers aren’t great enough for investors,’ as if this were a rationale for doing nothing … it’s terrible beyond my ability to explain,” said Demeter, an Agua Dulce resident.
She became all the more motivated when she discovered that brain tumors are the leading cause of death in kids with cancer, and that DIPG, a disease described to her as insignificant, is responsible for the majority of brain tumor deaths annually in the United States.
“It couldn’t have been a more clear case to fight for children with cancer,” she said.
Demeter organized The DIPG Advocacy Group, taking a group to Washington, D.C. last month to visit the offices of Congress in support of H.Res.69, the DIPG Awareness Resolution. Jointly introduced by Reps. Steve Knight (R-CA-25) and Jackie Speier (D-CA-14) in January of 2017, the resolution designates a national awareness day, May 17, for DIPG and encourages greater research consideration for children who are dying in the current medical research system, which, for those affected by pediatric cancer, is “unapologetically and systematically divested of concern,” Demeter said.
The Advocacy Group members who traveled to Washington, D.C. consisted of individual advocates, including Paul Miller, co-founder of the group from Littleton, Colo., the Psar family of Knoxville, Tenn. from the Julia Barbara Foundation, Melany Knott of Mt. Airy, Maryland, and her daughter Kaisy, who is in active experimental treatment for DIPG, and others.
H.Res.69 requires only a vote in the House of Representatives to instate DIPG Awareness Day, and thus far has 29 co-sponsors, Ruben Gallego (D-AZ-7) most recently, and also Andy Barr (R-KY-6), Duncan Hunter (R-CA-50), Jackie Rosen (D-NV-3) and Doris Matsui (D-CA-6). Yet, raising awareness can be slow-going, as the bill has not been considered by the Energy and Commerce Committee where it sits, and which controls its fate.
“After you find out there’s nothing that can be done, the grief begins; you remain in this world of suspended animation as you helplessly watch your child die,” said Demeter, who contributed to the text of the legislation along with conferring experts, Dr. Michelle Monje of Stanford University, Dr. Adam Green of the University of Colorado at Denver, and the Office of Congressional Relations at the National Cancer Institute. “Along the way you discover when you ask ‘why,’ the answer is the same everywhere you turn: ‘The numbers aren’t great enough for investors.’ The dying, and children, are clearly not priorities in our medical research system.”
For more information about the DIPG Advocacy Group, visit www.hres69.org, or their group page on Facebook. It is a grassroots organization with no corporate backing, just volunteering advocates, initiated by Jack’s Angels Foundation in Agua Dulce.
Powderpuff Fundraiser for Brain Cancer May 17
Vasquez High School students in Acton are preparing for their 6th Annual Powderpuff Football Game on May 17 benefiting Jack’s Angels, the local charity dedicated to awareness and research for DIPG, the deadliest pediatric brain cancer, and advocacy for children with cancer. The Powderpuff Game began in 2013 with then senior students Oren Dye and Brandi Beltrane, and newly appointed principal, Ty Devoe, who were inspired to create an event to benefit the new 501(c)(3) charity. Little Jack Demeter, just 3 years, 11 months old, died in July of 2012 from the effects of DIPG, and his mother, Janet, was determined to start something that would help lead to solutions to the disease.
With student and faculty coaching the girls on their football skills and a full cheer squad of enthusiastic young men with a flair for humor and exhibitionism, the first Powderpuff Football Game became annual entertainment.
“Each year the game has been exciting – I hope this year that we’re able to bring out more people to enjoy it!” Demeter said. “Many don’t realize that our community has been, in part, essential to the beginnings of the DIPG Awareness Movement, which is a powerful asset to childhood cancer awareness in our country today.”
Due to the leading support of Vasquez High School and a handful of private donors, Jack’s Angels has managed to raise greater awareness to pediatric brain cancer at the state and federal levels. In 2014, California passed the first-ever DIPG Awareness Resolution; last year, 22 states, including California, had such a resolution. Congressman Steve Knight (R-CA-25), who was state senator in 2014, introduced the first National DIPG Awareness Resolution to U.S. Congress in 2016 and again in 2017. The national consensus among the states in 2016-17 was May 17 as DIPG Awareness Day, as May is Brain Tumor Awareness Month, and so it was adopted by the National Resolution H.Res.69.
H.Res.69 suggests that pediatric and high-risk cancers have greater consideration in the research grant process with public and private funding sources. Currently, DIPG research is funded almost entirely by the collective work of foundations led by bereaved parents. Brain cancer is the leading cause of death in children with cancer; of those deaths, DIPG is responsible for the majority, yet it remains one of the least-funded areas of research.
This year, the VHS Powderpuff Football Game is on Thursday, May 17, the first nationally celebrated DIPG Awareness Day, made possible in part by the caring spirit of Vasquez High School. The event opens at 6 p.m., with the kick-off at 6:30 p.m. at Jorgensen Field, 33630 Red Rover Mine Road in Acton. The roving purple Mustang mascot usually makes an appearance, and tickets are on site only. For more information about Jack’s Angels, or H.Res.69, visit www.jacksangels.org, and www.hres69.org, or visit them on Facebook.
Hero of the Week: Ty Devoe
When Ty Devoe began his job as principal at Vasquez High School in the fall of 2012, his students became receptive to the idea of assisting Jack’s Angels Foundation. May of 2013 was the non-profit organization’s first “Art for Jack” music and art festival for kids, and Vasquez High School students did some notable pieces of art for the display. It was also the first year that student Oren Dye began the Powderpuff Football Game to raise awareness for DIPG.
Ty Devoe has made sure there has been a game in May each year since then. Proceeds from the game have kept the mission of Jack’s Angels alive.
“He’s a deeply kind, genuine and generous educator and friend to the kids and staff at the school,” said Jack’s Angels founder Janet Demeter. “I’ve only heard glowing remarks from colleagues and students over time.”
ASB director Amy Ciceri is also a solid supporter of the charity’s work, and student Garrett Musil is also spearheading the event this year.