The ALS Association

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Ellyn C. Phillips

ALS Association Position: Secretary, The ALS Association Board of Trustees
Professional Position: Full-time Volunteer
Company: The Association Greater Philadelphia Chapter
Location: Ambler, PA
Ellyn C. Phillips

Ellyn Phillips was nominated by the Governance Committee.

Ms. Phillips first heard the letters ALS in December, 1982 when her husband Alan Phillips was diagnosed. Their daughter Amy was 16 months old.

She sought out the local Chapter and met Dottie and Ben Ohrenstein who ran both board and support group meetings from their house.

Two years later, after the passing of her husband, Ms. Phillips became the 4th President of the Chapter. At that time the Chapter’s revenue was $4500. That figure was given a boost when, thanks to her mother, the indomitable Malvina Charlestein, the Phillies joined the fight against ALS, agreeing that “ALS belonged in baseball”.

32 years later the Phillies have raised over $17,000,000 for the fight against ALS and are committed to helping strikeout ALS.

As President, Ms. Phillips has helped to lead her Chapter to achieve excellence in development, patient care and public policy. Today the Chapter’s revenue is anticipated to be approximately $6,000,000.

In 1986, the first year there were Chapter elected members to the Board of Trustees, Ms. Phillips joined her father, Morton Charlestein as a Board Member. Over the past three decades, she has created and served on many Committees and Programs

  • Established the Advocacy Committee (now Public Policy) in the early ‘90’s
  • Established the Drug Company Working Group with Hiroshi Mitsumoto, MD in 1994
  • Chaired the Research and Development Committees
  • Served on the Executive Committee and sat on most Board Committees and Subcommittees

Representing The ALS Association she has served on:

  • NINDS Council
  • FDA Advisory Committee on Central and Peripheral Nervous Disorders
  • Department of Defense ALS Research Group

Recipient of the inaugural:

  • Lawrence A. Rand Award
  • Rasmussen Advocate of the Year

Ms. Phillips thinks of herself as a fundraiser and patient advocate. She maintains close relationships with many donors and is especially proud of those families who she has known for three generations.

Ms. Phillips was born in Philadelphia, PA, attended George Washington University and graduated with a BA in history. She earned an MS at the University of Pennsylvania in Education with a specialty in K-12 Reading.

Ms. Phillips enjoys cats, reading, orchids, nature walks and hikes in Maine, listening to classical music, Bruce Springsteen and following the Phillies.

Of all that she has done in her life, nothing compares to being the mother of her delightful daughter Amy, who married last year.

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