Ellyn Phillips became involved with ALS in 1982, when Alan, her 34- year-old husband was diagnosed. Dr. Kenneth (Kurt) Fischbeck was his neurologist.   When Alan died in 1984, their daughter, Amy, was just 3 years old.

ALS is a family disease and Ellyn’s parents, Malvina and Morton Charlestein knew that ALS belonged in baseball. Fortuitously, an article that appeared in the Philadelphia Inquirer in the Summer of 1983 describing the Phillips Family’s struggle with ALS caught the attention of Nancy Giles, the wife of then Phillies owner, Bill Giles. Thus began the commitment of the Phillies to the fight against ALS.

Almost 40 years later, the Phillies have raised over $20M for the ALS Association, Greater Philadelphia Chapter’s programs.

In 1992, as a member of the National Board of The ALS Association, Ellyn formed the Advocacy Committee 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 1994, Drug companies working on ALS were brought together via the Drug Company Working Group through the leadership of Hiroshi Mitsumoto, MD, and Ellyn. Early members were Rhone-Poulenc Rorer, Cephalon, Regeneron and Amgen. She also coordinated regional workshops with researchers from the Mid-Atlantic which also provided an opportunity for patients and families to attend updates on research.

The ALS/MND International Symposium was held in Philadelphia in 2000, providing another opportunity for the ALS community to meet the researchers.

The Chapter continues to host Research and Caregiving programs.

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 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.

Today, Ellyn continues Alan’s battle as the Chapter’s Board Chair Emeritus and on the journey that began with three words: amyotrophic lateral sclerosis.