5/4/11 - National Journal: Profile of Maureen Lilly

Photo credit: Lauren Carroll

Maureen Lilly was putting 10-year-old Rebecca to bed on a warm night after Memorial Day weekend in 1991, when her daughter suddenly lost the ability to speak. Rebecca had been suffering from terrible migraines in the previous weeks and had gone through a few episodes where her speech seemed a little off, but this was different. Rebecca was looking at her mother like she had no idea who she was.

Lilly and her husband rushed her to the emergency room, where she nearly died. So began the Lillys’ long, hard battle with glioblastoma—the most insidious of all brain tumors. Rebecca was in and out of hospitals for the next six years, getting treatment at the cutting edge of medicine. After multiple rounds of radiation and two surgeries failed to keep the cancer at bay, she became one of the first children in the country to undergo gene therapy. The Washington Post captured the Lillys’ struggles in haunting detail, as a reporter and photographer followed the family’s ordeal for a more than a year. Despite the best efforts of her doctors, Rebecca Lilly died in 1997, a few weeks shy of her 17th birthday.

Since then, Maureen Lilly, now 63, has dedicated herself to making life better for other families contending with the unimaginable—a child stricken with cancer. This month, she takes over as executive director of the Children’s Cause for Cancer Advocacy, a group that lobbies for greater resources and more-effective treatments for pediatric cancer patients and their families. Lilly has served on the organization’s board as treasurer and policy adviser since 2000.

“When you have a cancer experience, you don’t want it to be a total loss,” Lilly says. “You want to be able to give back to the people that supported you, and you want to see improvement.”

For Lilly, that means getting cancer survivors and their families the resources to deal with the painful physical and emotional aftermath of overcoming the disease, and ensuring that the National Institutes of Health and the National Cancer Institute have adequate funding to support new therapies. It’s a slow and uphill fight: FDA has approved a single drug in the past 20 years to treat childhood cancer, and pharmaceutical companies hesitate to make the steep initial investment needed to develop drugs.

Lilly’s crusade is deeply personal, driven by memories of her second-youngest daughter. Rebecca never let her illness diminish her hunger for life, her mother remembers. She was ever the doting sibling to her baby sister, Sarah. Frail from treatment, she nevertheless insisted on playing in the city basketball championship game—for about 30 seconds—just months before she passed away. And she testified on Capitol Hill about the importance of funding federal agencies that do pediatric cancer research and of developing less-toxic treatments. Lilly remembers having to wear gloves to handle the drugs that Rebecca was taking; the image of the medications burning through Styrofoam is seared in her mind.

“What could be more important?” Lilly says of her commitment to the cause. “At the end of the day, even the little things are building toward, I hope, better outcomes. I feel so lucky to be in a position where what I think is important is what I do for a living. This is an opportunity to be very focused on what I’ve learned and what I’ve seen and what we can do better.”

Lilly brings both political and nonprofit management chops to her job. Right out of college, she worked for then-Rep. James Delaney, D-N.Y., before moving on to the presidential campaign of Fred Harris in 1976. More recently, Lilly served as the director of planned giving and stewardship at the National Hospice Foundation and as administrator of the Washington Home Center for Palliative Care Studies.