Over the last couple of years, Jennifer Bird Pownall has become one of the region’s leading lay advocates for brain tumor awareness.
In cased you missed it, May was National Brain Tumor Awareness Month as designated by the National Brain Tumor Society. But if you did miss it, you weren’t the first or only one.
According to West Torresdale resident Jennifer Pownall, who has been living with three benign brain tumors for the last two-and-a-half years, most folks have no idea what those commemorative gray ribbons represent. In fact, many have never even seen the ribbons.
“Nobody supports it,” Pownall, 44, said during a recent interview. “I’ve been on a campaign since I was diagnosed to get the brain tumor community recognized.”
Her success in that endeavor may never be complete, but that’s not due to a lack of effort. Over the last couple of years, Pownall has become one of the region’s leading lay advocates for brain tumor awareness.
A lot of people don’t realize that almost 700,000 Americans are living with brain tumors, with almost 80,000 new cases diagnosed each year, she said, citing figures published by the American Brain Tumor Association. About one-third of cases are malignant or cancerous. About 17,000 of those patients died last year.
Pownall’s commitment to advocacy began in 2015 after she met countless child brain tumor patients during her visits to Thomas Jefferson University Hospital. That August, she organized a beef ’n’ beer at Cappy’s bar in Mayfair with proceeds to benefit the National Brain Tumor Society.
A month later, Pownell launched the Air Guitar Challenge, a YouTube-based fundraiser similar to the Ice Bucket Challenge, but with a twist. Instead of dumping ice water onto their heads, participants had to record themselves playing air guitar to the audio of their favorite song. Lip syncing was also encouraged.
Pownall’s air guitar campaign fell a bit short of its ice bucket counterpart, but her YouTube video generated about 1,500 views and several thousand dollars in proceeds.
And it succeeded in garnering a local following that included responses by editorial staffers from both of the city’s major daily newspapers and SEPTA employees. Mayor Michael Nutter made a cameo in the Inquirer’s version of La Grange by ZZ Top.
In connection with the challenge, Pownall did several interviews and guest appearances on local TV and radio broadcasts. Phillies legend Darren Daulton, a brain cancer survivor who had two tumors surgically removed in 2013, must have been watching. He invited Pownall to join the board of his foundation, which provides financial assistance to people affected by brain tumors. She’s the vice president of fundraising.
Earlier this year, Pownall successfully lobbied City Council to adopt a resolution recognizing May as Brain Tumor Awareness Month in Philadelphia to coincide with the national commemoration. Councilman Bobby Henon sponsored the bill.
“It felt like a victory when I posted it on Facebook and the five thousand people who follow me saw it. It felt that there was somebody out there recognizing us,” she said. “It was acknowledgement and support.”
Next month, Pownall will help run the Daulton foundation’s inaugural Wiff or Wiffout Classic, a Wiffle Ball tournament on July 22 in Conshohocken. For details, visit darrendaultonfoundation.org/events. The foundation’s annual golf outing in Fort Washington will follow on Oct. 9.
On the side, Pownall has also launched an unplanned and unexpected, but promising acting career. She already has three acting credits and a listing on IMDb under “Jennifer Bird Pownall.” Bird is her maiden name.
In Pharaoh’s Bread, an independent feature film due out in December, she portrays Paula Short, a 1970s-era hippie in a rock band. It’s classic type-casting.
“Uh huh,” she said.
In another indie film, Right Before Your Eyes, due out next May, she’s Hope, a Philadelphia bartender and confidant of the male lead. Her character is also a brain tumor sufferer who keeps her condition secret until the customer’s constant complaining prompts her to boil over.
“One day she finally says to him, ‘You think you have it bad.’ Then she lets him have it,” Pownall said.
With so much going on in her life, it would be easy to assume that Pownall’s brain tumors aren’t that big a deal. She doesn’t have cancer and doesn’t look sick. But appearances deceive, she said. Every day brings her new challenges involving pain, functionality and emotional well-being, just to name a few. Earlier this year, she had to quit her full-time job in the Pennsylvania State Employees’ Retirement System after 18 years. The daily grind became too much. She also lost her health insurance and sacrificed most of her pension.
Meanwhile, her tumors continue to grow. There is no known cure or treatment for her condition, other than radiation, which might shrink the tumors only temporarily and would likely bring their own set of near-crippling side effects. Surgery is out of the question due to the positioning of the tumors on her frontal lobes.
Pownall goes for MRIs regularly, costing $600 each time, and visits her doctor every six months, or when her bouts with pain become so acute or sustained that she needs immediate relief.
“It has a devastating physical impact. But mentally, emotionally and financially it’s a big hit,” she said.
“By me helping other people, living my life, acting, doing things — that’s how I’m taking care of myself. That’s my therapy.” ••
William Kenny can be reached at 215–354–3031 or wkenny@bsmphilly.com. Follow the Times on Twitter @NETimesOfficial.
