On Super Bowl Sunday 2011, Susan Hilburger suffered a grand mal seizure. After being admitted to the hospital, doctors informed the Las Vegas resident that she had a brain tumor. Though she had experienced various symptoms prior that she attributed to a stressful job, this was the first clear indication of the disease.
According to the American Brain Tumor Association, there are close to 700,000 people living with a brain tumor in the United States. Nearly 80,000 new cases will be diagnosed this year, and the disease is currently the leading cause of cancer-related deaths in children up to age 14.
Thanks to the decision to have a craniotomy and remove the tumor, followed by chemotherapy and radiation treatment, today, Hilburger’s cancer is in remission, and she is the proud mother of 18-month-old Gianna. But, her story of survival is not the norm. “I am one of the 5 percent,” Hilburger says, referencing the five-year survival rate for those diagnosed with glioblastoma—a highly malignant tumor that affects the brain or the spine. “In the last 30 years, there have only been four FDA-approved drugs to treat brain tumors.” In comparison, the National Cancer Institute lists over 50 FDA-approved drugs for the treatment of breast cancer and roughly 700 currently in clinical trials versus the 200 for malignant brain tumors.
Hilburger’s frustration with the slow progress in treating brain tumors motivated her to volunteer as a board member for the Desert Gray Matters 5K. The third annual race takes place on Sunday, May 21 at Sunset Park, and all of the proceeds will go to the Musella Foundation, which provides financial support and education for brain tumor patients as well as funding for research. “If we could go up to even four years for survival that would be great,” Hilburger says. (The average survival rate for those diagnosed with a brain tumor is about two years.)
Founded in 2015 by Todd and Vicky Sain after Todd was diagnosed with a brain tumor, the inaugural event raised around $15,000 and gained the attention of Phil Hagen, who now serves as director for the race. [Editor’s note: Phil Hagen served as the editorial director for Wendoh Media from 2009–2014.] “I heard about it because my father passed of a glioblastoma, and I wanted to do something. … I just started passing around flyers, and when [the Sains] couldn’t do it for 2016, I grabbed the reigns,” Hagen says. Todd Sain passed away five months after the inaugural event.
Last year the event raised $36,000, and this year the goal is $50,000. Participants are encouraged to raise additional money through sponsors, and those unable to participate can make a donation.
“[Brain cancer] is such a mystery, what it is and how to do anything about it,” Hagen says. “That’s a good reason to run: to get us out of the dark ages.”
Desert Gray Matters 5K
Sunset Park, 2601 E. Sunset Rd., May 21, registration online through May 20 and day of the event 7:30–8:30 a.m., race at 9 a.m., $40, wizathon.com/walktoendbraintumors-nv