Amyotrophic Lateral Sclerosis... Those three words changed Ellyn Phillips' life forever. It was December 1982 when they were uttered by a neurologist who told Ellyn and her husband, Alan, that he had ALS/Lou Gehrig's Disease. Neither Ellyn nor Alan was prepared for what was to follow. At the time, Alan was 34 years old and their daughter, Amy, was just 16 months old.
At first Alan was determined to be as independent as possible. He said that he wanted three things in life: a child, for the Phillies to win the World Series (1980) and a trip to the Baseball Hall of Fame. In May 1983, Alan and Ellyn made their trip to Cooperstown in Alan's newly acquired motorized wheelchair. Alan remained in his position as an attorney throughout 1983, adapting to his quickly diminishing speech and motor skills. Family, friends and neighbors were extremely helpful with childcare, food preparation and yard work. A college friend of Ellyn's came by every week for repair work, even rebuilding the outside stairs of the house to accommodate Alan's wheelchair. Soon however, Alan became more dependent for his most basic needs. It was when Ellyn, Alan and Amy returned from an outing and both Alan and Amy needed immediate attention that Ellyn realized she needed to have help in the home. This wasn't an easy decision, because their privacy was immediately compromised. In early 1984, Alan was given the first generation "talking" computer. While now a staple of an ALS patient's equipment pool, the computer proved too difficult for Alan to master as he was unable to move. In August 1984, Alan had a feeding tube inserted in his stomach to provide nutrition he was unable to take in by mouth. Despite an heroic fight, Alan succumbed to ALS on September 21, 1984.
Ellyn became president of the Greater Philadelphia Chapter of The ALS Association in December, 1984. Through the work of Ellyn's mother, Malvina Charlestein, the Philadelphia Phillies adopted the charity that year as a focus of their charitable efforts.. In 1992, then Phillies pitcher, Curt Schilling and his wife Shonda, began their Curt's Pitch program that is now worldwide. The entire Phillies organization continues its partnership to this day and has raised over $11 million in funds for research and patient services for the Chapter.
In 1992, as a member of the National Board of The ALS Association, Ellyn formed the Advocacy Committee of The ALS Association to empower people with ALS and help them play an active role in the search for a treatment and cure for Lou Gehrig's Disease. In that effort, Ellyn has provided the voice of patients through collaborations with Congress and multiple federal agencies, including the Department of Defense (DoD), the Food and Drug Administration and the National Institutes of Health. Her efforts to represent patients also include leading The ALS Association in partnerships with the Centers for Disease Control and Prevention, the Department of Veterans Affairs and the Centers for Medicare and Medicaid Services to improve services for people with ALS and advance research to discover the cause, treatment and cure for ALS. Since 2007, Ellyn has served as a member of the DoD's ALS Research Program Integration Panel, advising the program staff on annual investment strategies, and recommending proposals for funding during the second level of the review process.
Today, Ellyn continues Alan's battle that began with those three words: amyotrophic lateral sclerosis.