Ellen Stovall discovered her life’s purpose at the age of 24. Diagnosed with Hodgkin’s disease just after giving birth to her son, “I promised myself that if I survived, I would do something to help others with cancer,” she recalls.
Possessed with “a burning desire” to see her son grow up, Stovall survived two more recurrences of cancer and, in the process, helped revolutionize how the disease is perceived, treated and regulated in the United States. Thirty-seven years after her first diagnosis, she’s one of this country’s leading advocates for cancer survivors, having served as president and CEO of the National Coalition for Cancer Survivorship since 1992. Founded in 1986, the NCCS has influenced federal legislation, produced groundbreaking publications that have impacted cancer research and treatment, and provided comprehensive educational and support materials to cancer survivors. In 1998, it organized the watershed “The March: Coming Together to Conquer Cancer,” in which about 250,000 people gathered on the National Mall in Washington, D.C.
“I’m in this job because it’s my cause, not my skill set,” says Stovall, who often works 12-hour days giving presentations to policy-makers, health care professionals and cancer survivors and admits she’s still “terrified of television,” though she’s appeared on CNN’s Larry King Live and NBC’s Today show. “It’s my passion for my work that makes me good at it.”
Raised in Honesdale, Pa., Stovall grew up in a family devoted to community service and leadership. Her mother volunteered for the Red Cross, her aunt was a Girl Scout leader and other relatives served as lay rabbis for the town’s lone synagogue. “In my family, becoming the president of this and the chair of that was a natural way of being,” she recalls.
Stovall also loved her Reform congregation and its many visiting rabbis. “The learning that went on in the synagogue was at a very high level, and I was exposed to so many stimulating ideas for how to make the world a better place,” she recalls.
After briefly studying music at West Chester State College, Stovall spent five years at Penn State drifting from one field of study to the next, she says, in large part because she didn’t feel well. By the time she learned of her cancer, she had married and moved to Washington, D.C. “I was a young mother, and there were no support groups for people my age,” she recalls.
When she recovered, Stovall founded a pioneering support group for young cancer survivors and became a full-time volunteer for the American Cancer Society. She would also go door to door for the Leukemia & Lymphoma Society “trying to make a difference. I didn’t know how long I’d be around, but I knew this was how I wanted to spend my time,” she says.
Stovall discovered the NCCS during her second recurrence of cancer when she sought a psychiatrist for guidance and noticed a pamphlet in the doctor’s office. The word “survivor,” used to describe someone diagnosed with cancer, immediately caught her eye. “I was on fire,” she recalls of feeling empowered by a word that didn’t connote “victim.”
Elected to the NCCS’s board of directors in 1988, Stovall has “been hooked” on the organization ever since. She also serves on a number of other boards and committees and on the Institute of Medicine’s National Policy Cancer Forum. “I live my life joyfully and take pleasure in the littlest things,” she says. “Cancer has taught me humility, and if there’s anything I’ve learned, it’s about not sweating the small stuff.”