January Volunteer of the Month: Bill O’Sullivan

ALS United Mid-Atlantic is proud to kick off 2026 by honoring Bill O’Sullivan as our January Volunteer of the Month. Bill is incredibly involved in the ALS community – offering his time, energy, and diagnosis to help others living with ALS.

In early 2020, Bill noticed left arm weakness and forearm pain while doing a home renovation project. With a family history of ALS, Bill brought his concerns to his primary care doctor and was referred to an orthopedist and neurologist.

After being told it wasn’t ALS, but they weren’t sure what was causing his symptoms, Bill decided to consult with a neurologist with Penn State Neuroscience Institute at the Hershey PA Medical Center. This is where Bill received the life-changing news that he had a motor neuron disease, ALS, 18 months after his first symptom.

Bill and his family were no strangers to ALS when he was diagnosed. His mother and four of her siblings had also lived with ALS. However, he was not aware of the research identifying familial genes linked. After a doctor recommended genetic testing, he discovered his family has a 50% chance of inheriting a rare ALS gene – CHCHD10. This news didn’t stop Bill but rather motivated him to become a voice and an asset to those living with ALS.

Bill and his family have dedicated endless time and energy to supporting the ALS community since Bill’s diagnosis. His family’s ALS United Walk team, Adeline’s Angels, has walked at the Ocean City ALS United Walk for 14 years in honor of Bill’s mother and their family’s future generations.

In addition to their support of the Ocean City ALS United Walk, Bill and his wife, Linda, are members of the Patient and Caregiver Grant & Advisory Board for the recently approved VITALS Communication Trial with Dartmouth College.

Being involved in more than 20 research studies and clinical trials, Bill says, “Research will eventually unlock a cure. Involvement in trials and studies for data collection is of extreme importance. This is one way for you to help yourself, others and future generations.” One of these clinical trials includes the “Silence ALS” trial that targets Bill’s specific familial gene to slow or stop ALS decline.

In addition to his participation in studies and trials, Bill is co-chairperson for NextGen ALS. This is a nonprofit organization started by a branch of Bill’s ALS extended familial CHCHD10 gene tree, The Webers. He was also selected and trained as an ALS Research Ambassador by the Northeast ALS Consortium (NEALS) and the ALS Clinical Research Learning Institute (CRLI). Bill is also on the Patient Advisory Board for a clinical biomarker trial. When asked what lessons Bill would teach others from his journey in ALS research, Bill says, “ALS loss of function does not wait for anyone. I recommend being aggressive. What that means is learn all you can and always look to participate in trials and studies. Learn from others’ experiences you will not live long enough to figure everything out yourself. Your ALS United Mid-Atlantic nurse is your best resource.”

Inclusion events, like the annual Longwood Gardens lunch, help bring Bill and his family closer to other families who are fighting the same battle. Bill says it helps to know they are not alone. From the annual Longwood Gardens lunch to his ALS United Mid-Atlantic nursing staff at the ALS Certified Treatment Center of Excellence at Penn State Health Milton S. Hershey Medical Center, Bill says he and his family have a wonderful and supportive relationship with ALS United Mid-Atlantic. He wants to extend special, heartfelt recognition to Maryann Jones, Erin King, Sue Walsh, and Maureen Reid for all they have done and for their continued support.

Bill encourages those living with ALS and their families to be as involved as possible. “Attend ALS events, they are rewarding and an opportunity to connect with others in our same fight. I recommend participation in an ALS United Walk nearest you. The event is an opportunity to come together, share experiences, and know we are in this battle together. Your support helps fund local care service programs and cutting-edge research.”

ALS United Mid-Atlantic wants to extend our greatest thanks to Bill for dedicating so much of his time and energy to the ALS community. Because of his selflessness and involvement, we are able to work towards a cure every day. We are proud to honor Bill as our January Volunteer of the Month.

Listen to Bill’s podcast with Tony Heyl here.