Leiomyosarcoma patient’s legacy lives on through the ‘Jill Effect’

Jill Birnbaum’s life was a “spice rack of colors, flavors, and culture,” her parents, Margie and Buzz, say. It was that enthusiasm for culture and variety that brought Jill, a social worker who had traveled to Nepal and Burma, from Brooklyn to London in 2008. She lived there with her partner, Warren, for four years until tragic circumstances brought them back home, to Newton, Mass.

In September 2012, Jill, 40, went in for a standard surgery in London to treat uterine fibroids. Her doctors found one of the fibroids was malignant and diagnosed her with uterine leiomyosarcoma, a rare and aggressive soft tissue tumor that can be challenging to diagnose and treat. Her British doctors removed the tumor through a hysterectomy and thought all was well, but a few months later, in December, her cancer was back.

“Jill had planned a visit to Boston to see her friends before she started chemo,” Margie, Jill’s mom, recalls. “They, and we, managed to convince her to start chemo here instead, and she got into Dana-Farber’s sarcoma group the next day.”

Jill Birnbaum smiling in a green shirt
Jill radiating her “Jill Effect” through a brilliant smile.

Jill and Warren gave up their world-traveler life to move into Margie and Buzz’s home. Warren would get up at 3:00 a.m. to work on London time, then afterward go with Jill for her chemo at Dana-Farber Cancer Institute.

“Everyone at Dana-Farber was just terrific,” Margie says. “Jill had several rounds of chemo, which were very difficult, and a surgery to remove a painful tumor. She wasn’t feeling great and there wasn’t much they could do, but Jill’s friends rallied around her.”

During Jill’s treatment, Margie and Buzz remember how Jill’s friends flew in from Colorado and New York City to spend time with her downtown, and how Jill explored acupuncture in Boston’s Chinatown. Margie’s payment for being her taxi driver? “Some nice buns from a Chinese bakery,” Margie recalls with a smile.

While Jill was in treatment, Margie also faced her own cancer diagnosis, of the thyroid. They were in the hospital at the same time while Margie had surgery to remove her tumor. “I came home on Friday, Jill came home on Saturday, and she died the following Friday,” Margie says.

Although Jill’s battle with leiomyosarcoma lasted just a few short months, her impact on those around her continues now, 10 years later. A passionate defender of women’s rights, Jill had started a women’s workers cooperative in Sunset Park, Brooklyn, called Si Se Puede, which translates to “yes, we can.” What started as a group of 15 women is now 175 women strong, many of whom never met Jill, but who still honor her memory through a service each year and recount to Margie and Buzz how important the organization Jill started is in their lives.

“It’s her biggest legacy,” Margie says—but not her only one.

Two bike riders and a team member of the Jill Effect Fund at the 2016 Pan Mass Challenge
Riders supporting the Jill Effect Fund at the 2016 Pan Mass Challenge

Jill’s family started their own fund at Dana-Farber to support leiomyosarcoma research under the direction of Suzanne George, MD, director of Clinical Research in Dana-Farber’s Sarcoma Center. To date, “The Jill Effect Fund” has raised more than $440,000 to fund research into advanced screening and early detection options for this rare disease, to help others with the disease continue to shine brightly as Jill did, her parents say.

One of their main avenues for raising money is participation in the Pan-Mass Challenge (PMC), Dana-Farber’s largest single contributor. Jill’s brother and uncle are riding in their 10th PMC this August in Jill’s memory and to continue her legacy through the Jill Effect Fund, and Margie and Buzz get involved by volunteering. The family has also hosted a golf tournament in the past and are exploring more ways to keep their community and Jill’s network involved in Dana-Farber’s mission.

“I’d choose Dana-Farber every time,” Margie says, reflecting on her family’s experience. “Everyone knows what to say; they’re there for you to hug, to listen, to give you advice.”

“Jill never defined herself as someone with cancer,” she continues. “You’re living with it, but it’s not who you are. Together, we can defy it.”

Support a rider in the Pan-Mass Challenge or make a general donation to support PMC and Dana-Farber. Your donations also support The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.