Dr. Stacy Lewin Farber has been an asset to not only ALS United Mid-Atlantic, but to the entire ALS community nationwide. She has brought her intelligence, determination, and hope into every corner of the community from medical research to ALS United Walks. ALS United Mid-Atlantic is honored to name her our 2025 Volunteer of the Year.
Stacy was first diagnosed with ALS in February of 2021, after the first onset of symptoms in July of 2020. With her background in the medical field as an obstetric anesthesiologist, she had studied ALS in medical school but never expected to live it one day. When she received her diagnosis, she was determined to learn as much as she could and contribute to the ALS community through research along the way. Her quick diagnosis and dedication allowed her to qualify and partake in the Healey Platform D, or Pridopidine study. She was given two capsules twice a day for the first 6 months in this study. Being a “blind-test subject”, she did not know if the capsules were placebo, or the treatment. However, once the 6 months concluded, she participated in Open Label Extension or OLE. This is a period of time when the blinded portion of a trial is concluded, and the patient receives the actual therapeutic modality. Although the phase of trail she was on did not meet its primary end points, she feels grateful to have participated and wonders if she can attribute certain ways in which the disease progressed more slowly for her to the treatment. Being a willing and enthusiastic participant in this clinical trial is just one small example of what Stacy has given back to the ALS community.
In addition to being an active participant in a clinical trial, Stacy took part in a two-day course with the Critical Research Learning Institute to become a NEALS Research Ambassador. “This has allowed me to sit as a patient advisor for various pharmaceutical companies, attend the International Alliance Meeting … and spread the knowledge gained to other persons and caregivers living with ALS. I am active in many ALS organizations and gladly engage in advocacy and fundraising,” says Stacy. Stacy joins her friend John Russo, who is also living with ALS, to assist the ALS United Mid-Atlantic board’s research committee as they approve funding for local projects and collaborations with organizations like ALS-TDI. “All of my participation in panels and advisory boards stems from my certification as a NEALS Research Ambassador. It has opened up a multitude of opportunities,” said Stacy.
In addition to the extraordinary work Stacy has done on the research side of the ALS community, she has also added her voice to advocacy efforts by testifying in front of committees in her home state of New Jersey, and in March 2025, she spoke to lawmakers about the critical need to invest in the ALS cause. “What I know is that ALS is a club that no one wants to belong to, but it includes the most wonderful people. I hope to see a future in which ALS becomes a livable disease if not eradicated completely.”
Stacy’s husband Dan, and their sons Zachary and Ethan, have also become very active members in the ALS community since the diagnosis. Together, they have organized one of the top fundraising teams for the Philadelphia ALS United Walk and joined the Philadelphia Phillies for ALS Awareness Night at Citizens Bank Park. Stacy continues to volunteer because she believes we are stronger and better together.
Stacy has spent the last 4 years supporting the ALS community. When asked how ALS United Mid-Atlantic has supported her and her family, she said, “Home care services have helped me with ramping of our home, transportation assistance, evaluating our house for modifications, and our monthly peer support group is something we look forward to very much. In addition, my involvement as a member of the home care services, scientific research committees, and our fundraising/advocacy efforts keeps me involved and inspires me to keep fighting.”
Since her diagnosis in 2021, Dr. Stacy Lewin Farber has become a pillar of the ALS community, a voice for those living with ALS, and a beacon of hope for the future. “Plan for the future, but always live in the moment,” said Stacy, when asked what lessons she would like to share with others. From all of us at ALS United Mid-Atlantic, thank you, Stacy, for everything you have done and continue to do. You are an inspiration to the ALS community.