Ellen Cohen; Founder of Lymphoma Foundation
Ellen Glesby Cohen, whose battle with non-Hodgkin’s lymphoma led her to establish the Lymphoma Research Foundation of America, died Wednesday at Cedars-Sinai Medical Center in Los Angeles. She was 51.
Cohen was a television commercial producer and mother of two young children when she was diagnosed in 1989. Frustrated in her search for information about treatment, Cohen decided while hospitalized for chemotherapy to form a group to lobby for increased funding of lymphoma research and provide support for patients.
Since 1991, the Los Angeles-based Lymphoma Research Foundation of America has awarded $3 million to support 92 lymphoma research projects at universities and cancer centers across the country.
Cohen had been complaining of fatigue, frequent colds and swelling in her feet and lymph nodes when she consulted a doctor in 1987. Blood tests did not reveal anything suspicious. She was pregnant with her second child at the time.
Her ailments did not improve, and her husband, an internist, eventually referred her to an oncologist, who sent her for a biopsy. Within a week, she had the bad news: She had a slow-growing form of non-Hodgkin’s lymphoma that had already spread throughout her body. She was 39.
She was told to watch and wait, the standard practice for her type of lymphoma. She did that until she developed obstructions in her pharynx and abdomen that required aggressive treatment.
During her first course of chemotherapy, Cohen learned that some 85,000 lymphoid malignancies are diagnosed each year in the United States, making it one of the most increasingly common forms of cancer. She learned that the mortality rate was 50% and that no one seemed to know what caused this type of cancer. And she learned that there was no national organization pressing for more research, educating the public or offering support to patients.
“I had to do something,” Cohen told a congressional hearing in 1998. “So I picked up the telephone and began calling everyone I could think of. Each phone call led me to someone else--another doctor, another lymphoma patient. Those conversations convinced me that I could start a nonprofit organization.”
One of the people she consulted was Dr. Ron Levy, chief of medical oncology at Stanford University Medical Center. When Cohen told him she was going to start a foundation, he told her, “Don’t bother. It’s unlikely you’ll be able to make much of a difference.” She did not listen to him. By November 1992, she had held the group’s first fund-raiser, which brought in $150,000.
“Luckily, she didn’t listen to me,” Levy said, “because she made a huge difference in motivating those of us in the research community to continue advancing the state of lymphoma research.”
The foundation also offers support networks for patients, families and caregivers. It also sponsors an annual think tank for scientists and publishes a quarterly newsletter that reaches 30,000 patients and heath care providers.
Cohen, a native of Los Angeles who was a graduate of UCLA, battled lymphoma through two recurrences. Earlier this year she underwent a successful bone marrow transplant, but it so impaired her immune system that she contracted a rare fungal infection. She died of the infection.
She is survived by her husband, Dr. Mitchell Cohen; her children, Hailey and Josh; her parents, Elaine and Robert Glesby of Monrovia; a sister, Rebecca Glesby Gamlieli of Los Angeles; two brothers, Bruce Glesby of Montecito and John Glesby of Park City, Utah; and her grandmother, Ruth Levinson of Los Angeles.
Donations may be made to the Lymphoma Research Foundation of America, 8800 Venice Blvd., Suite 207, Los Angeles CA 90034.
