Ellen Glesby Cohen, president and founder of the Lymphoma Research Foundation of America (LRFA), died Wednesday, Aug. 23, 2000 at the age of 51. Ms. Cohen had undergone a successful bone marrow transplant for non-Hodgkin's lymphoma (NHL), but the treatment left her immune system weakened and vulnerable to a rare fungal infection, which, ultimately, caused her death. It had been her second recurrence of cancer of the lymphatic system in a battle that lasted nearly a dozen years. A staunch patient advocate and champion of biomedical research, Ms. Cohen devoted the last decade of her life to establishing and leading the Lymphoma Research Foundation of America, the nation's first organization dedicated to promoting and funding lymphoma- specific research.
Dr. Ron Levy, chief of medical oncology at Stanford University Medical Center, remembers first meeting Ms. Cohen. "Ellen showed up at an event at Stanford, introduced herself to me and said that she was going to start a foundation. I said 'Don't bother. It's unlikely you'll be able to make much of a difference.' Luckily, she didn't listen to me because she made a huge difference in motivating those of us in the research community to continue advancing the state of lymphoma research. Unfortunately, we were unable to make a difference for her, but I would like to remember Ellen as optimistic and unable to be deterred from her goals."
Ms. Cohen, who had been a Los Angeles mom, a doctor's wife and an independent TV commercial producer, was originally diagnosed with a slow growing form of NHL in 1989. Although the cancer had spread throughout her body, she was told to watch and wait, which is standard medical practice for this type of lymphoma. In 1990, Ms. Cohen developed an obstruction in her nasal passages requiring her to undergo chemotherapy.
It was during her yearlong recovery from treatment that Ms. Cohen decided to turn a devastating experience into something positive. In 1991, with the help of family, physicians and friends, the LRFA was formed as a way to fight her disease and to help others.
Representative Patrick Kennedy (D-RI) was the first of several members of Congress whom Ms. Cohen cultivated as Congressional champions of lymphoma and who received the Foundation's Paul E. Tsongas Memorial Award, named in tribute to the late Massachusetts senator who also battled lymphoma and served as the organization's Honorary Chair until his death in 1997. Other recipients of the award include Senators Dianne Feinstein (D-CA), Connie Mack (R-FL), Harry Reid (D-NV), Arlen Specter (R-PA), Tom Harkin (D-IA) and Barbara Boxer (D-CA), and Representatives John Porter (R-IL) and Rick Lazio (R-NY).
During the last several weeks leading up to Ms. Cohen's death, LRFA's mission continued to benefit from Ms. Cohen's dedication. "Even in the midst of her most challenging personal times, she had the ability to look past herself to the needs and concerns of this growing patient population," said Selma R. Schimmel, a friend, fellow cancer survivor and host of The Group Room, the nationally syndicated radio talk show about cancer.
Congressman Patrick J. Kennedy (D-RI) worked closely with the association in support of increased federal funding for medical research. For the past two years, it was Ms. Glesby Cohen who presented Kennedy with the Paul E. Tsongas Memorial Award for his efforts on behalf of the foundation.
Kennedy issued the following statement:
"I wish to express my deepest sympathies to the family, friends and colleagues of Ellen Glesby Cohen. I had the pleasure of working with Ellen over the past few years to increase awareness of lymphoma and to increase federal support for lymphoma research."
"Ellen's experience in battling non-Hodgkin's lymphoma led her to recognize the need for improved and safer cancer treatments and she became a tireless and effective advocate on behalf of all those touched by the disease."
"I join with the entire lymphoma community in expressing my sadness and in recognizing the major impact Ellen Glesby Cohen had on advancing lymphoma research and in improving the lives of hundreds of thousands of individuals stricken with lymphoma."
"Ellen founded LRFA in 1991 and, while fighting her own battle with this disease, grew the foundation to the impressive organization it is today. The approximately $3 million that LRFA has awarded to fund 92 medical research projects at cancer centers and universities across the country moves us closer to more effective treatments for lymphoma."
"I remain committed to committed to fight for increasing the federal commitment to lymphoma research. Ellen's legacy is one of dedication and commitment to advancing and accelerating the pace of lymphoma research as well as providing support and services to lymphoma patients across the country."
"May we all find strength in Ellen's legacy and use that strength to continue to support efforts to bring us closer to finding better treatments and a cure for lymphoma and for many other cancers."
Source: Lymphoma Research Foundation of America
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