At a May 28 ALS awareness event at Buona Sera in Red Bank for the Joan Dancy & pALS Foundation were Pat Schaeffer, RN; board member and Sinderella’s Ball co-founder Louis Weiner; philanthropist Carol Stillwell; and strategic advisor Larry Sykoff. COURTESY JOAN DANCY & PALS FOUNDATION
By Sunayana Prabhu
RED BANK – Carol Stillwell, a philanthropist and advocate for numerous health-related causes, recently hosted a gathering in collaboration with the Joan Dancy & pALS Foundation, joandancyandpals.org inviting guests for “meaningful dialogue” on Amyotrophic Lateral Sclerosis (ALS).
ALS, commonly known as Lou Gehrig’s disease, is a progressive and debilitating neurological disorder with no cure currently available.
The Joan Dancy & pALS (People with ALS) Foundation is a nonprofit that supports ALS patients and their families in Monmouth, Ocean and Middlesex counties.
The foundation’s board of trustees member Louis Weiner and strategic advisor Lawrence Sykoff organized the May 28 event at Buona Sera restaurant, announcing Stillwell, a Holmdel resident, as the foundation’s newest partner and ALS champion.
Stillwell spearheaded the special event that drew nearly 50 community leaders and advocates. Attendees listened to ALS professionals to deepen their understanding of the relentless disease and learn more about the work of an organization that has been at the forefront of serving families impacted by ALS.
Stillwell is the owner and president of Stillwell-Hansen, Inc., one of the state’s top data center infrastructure solutions companies, according to its website. “A portion of the company’s profits supports nonprofit causes with a strong focus on aiding cancer, healthcare and educational organizations,” the website states. Stillwell has been dedicated to philanthropic causes and serves as an advocate and major fundraiser for numerous charities.
Weiner has been involved with the foundation since 2012. In 2014, in memory of his wife Sindy, he and a friend created the Sinderella’s Ball that became one of Joan Dancy & pALS Foundation’s major fundraisers. Over the years the event has raised nearly $1.25 million for the foundation, he said.
According to Weiner, Stillwell sponsored a past event for the foundation but recently learned more about the foundation’s mission. After attending Sinderella’s Ball and seeing the impact firsthand, Stillwell became a strong supporter and ultimately hosted the May 28 awareness event to help bring in new advocates and donors to the foundation.
“It was really an education and awareness evening,” Weiner said.
The evening featured personal stories of courage and updates on the foundation’s impact from board members and medical professionals who work with the foundation, including Sean Magovern, president of the foundation; Douglas S. Livornese, M.D., a pulmonologist and the foundation’s medical director; and Pat Schaeffer, the foundation’s registered nurse. Schaeffer was a nurse to the late Joan Dancy, for whom the organization is named. The nonprofit was founded in Dancy’s memory in 2005 by her fiancé, Terry Magovern, then Bruce Springsteen’s personal assistant, with a mission to support as many individuals as possible in local communities affected by ALS. “ALS is devastating” and “expensive,” Weiner said. The disease affects nerve cells in the brain and spinal cord. As a result, ALS patients face muscle weakness, atrophy, loss of the ability to speak and severe respiratory issues.
“It takes a lot of resources to keep a family going with what they need,” Weiner added.
For Weiner, whose connection to the cause is deeply personal, one of the biggest gaps he sees is in public awareness of ALS’s far-reaching impact.
“Right now – in just Monmouth, Ocean and Middlesex counties – the patient count is pushing 90, and that’s a lot of people in a small area,” Weiner said. “Those are the people that have found the foundation. I guarantee you, there’s a good number of more people suffering with ALS in these three counties that we don’t even know about.”
The foundation provides direct services and immediate support to local ALS patients, such as loans of equipment, communication, and speech-generating devices, assistance with in-home care and social services.
“Without question, the most valuable service we can offer our pALS is delivering our professional staff to their home to join them on their ALS journey. On every visit they bring the accumulated knowledge base gathered from supporting over 800 previous pALS in every possible socio-economic situation,” said Sean Magovern, president, Joan Dancy & pALS Foundation.
The foundation runs on donations from individuals, businesses, and some government funding. Weiner noted that “96 cents of every dollar” the foundation receives in donations goes directly to patient services, including visits from nurses and social workers.
According to a statement from the foundation, ALS is as common as multiple sclerosis. About 6,000 people in the U.S. are diagnosed with ALS each year and it is estimated that as many as 30,000 Americans have the disease at any given time.
As ALS patient and caregiver needs evolve, the foundation is looking to pursue innovative approaches to enhance quality of life, reduce isolation, and provide meaningful support for patients, according to the foundation’s website.
Future initiatives include exploring expanded caregiver resources, wellness and mental health programs, community engagement, enhanced patient navigation, and strategic collaborations with organizations committed to compassionate ALS care.
The article originally appeared in the June 11 – 17, 2026 print edition of The Two River Times.
