ALS Family Charitable Foundation Will Close After Final Cliff Walk
After 2½ decades of philanthropic work, the ALS Family Charitable Foundation will cease operations later this month, following the completion of its 26th annual Cliff Walk along the Cape Cod Canal.
Mary Ann Singersen and Donna Jordan were each grieving the loss of a loved one to amyotrophic lateral sclerosis (ALS)—for Ms. Singersen it was her father, Edward J. Sciaba Sr.; for Ms. Jordan it was her brother, Clifford Jordan—when they connected in in 1998. The two women were not expecting to find such a solid source of solace in each other, but six hours into their 15-minute coffee date, they realized they had much more in common than they had thought and resolved to work together.
Ms. Singersen agreed to help Ms. Jordan with a fundraiser started by her brother before his death, called the Cliff Walk.
“The walk is along the Cape Cod Canal and she had told him that she would continue the walk in his memory,” Ms. Singersen recalled. “She asked me if I wanted to help her, and we could make it in memory of my dad as well, so I said ‘sure.’”
Their first year doing it together, about 60 family members and close friends turned out for the Cliff Walk and raised a few hundred dollars. By the following year, those numbers began to climb—400 attendees raising around $60,000—and continued to do so for the next two decades. By the time they were on their fourth walk in 2001, they raised more than $200,000. At that point, Ms. Singersen and Ms. Jordan were working with the Massachusetts chapter of the nationwide ALS Association, but were considering branching out to do more focused work that would help patients and families. They decided to go for it and in 2001, the foundation was born. Its founders never looked back.
“We went out on our own so we could help patients and families and still give to research because that was important, too,” Ms. Singersen said. “So that’s how it all started.”
At the core of their mission, Ms. Singersen said, was the belief that once people are affected by the terrible disease that is ALS, you become part of their family—an idea that soon became the basis of the organization’s mission and serves as its namesake.
Ms. Singersen said that over the years, the organization’s founders and board members worked to keep expenses to a minimum, so that as much of the raised funds as possible could be given to families and research causes. All in all, the organization distributed more than $3 million in funds over the quarter-century it was in operation.
“I always said I did not start this to get paid,” Ms. Singersen said. “That was one of the things that were important. We were very fortunate, with lots of great support and sponsorships for our events. There are a lot of people that we couldn’t have done it without. I can’t in any way, shape or form say that there were just two or three of us who did this—not at all. They say it takes a village; that absolutely was the case for us.”
The COVID pandemic took its toll on the ALS Family Charitable Foundation, putting a full halt to in-person events that were the basis of the organization’s fundraising process. While the foundation was still able to pull off a virtual Cliff Walk in 2020, the new Omicron variant the following year put a damper on its attempt to return in-person.
“I think we had about 400 people last year,” Ms. Singersen said. “Typically we have anywhere between 800 and 1,000 at the event. You just see how things have evolved over the last couple of years, so it was time. It’s time.”
It is a sad decision to have to make, Ms. Singersen said, but she believes it is the right one to make at this point in time.
“It’s very bittersweet because we’d like to be able to help out for many more years, but we just can’t do it ourselves,” she said. “At least we have an organization that we’ve shifted our patients over to; we’re thrilled about that.”
The Susie Foundation is a similarly focused nonprofit founded by Ryan Matthews in 2013 following the loss of his mother after a more than two-year battle with ALS. The organization started in Connecticut and has expanded to encompass most of New England and will step in for the ALS Family Charitable Foundation in its stead. Most of the ALS Foundation’s patients are already connected to Mr. Matthews and his Susie Foundation, which Ms. Singersen hopes will make the transition easier.
“That was my biggest thing: that our patients have an organization to turn to,” she said. “That made it a little bit easier, that at least we knew our families could turn to someone who thought the same way we did and who lived this exactly the way we did. There are many organizations and they’re all great, most of them are great, but not all of them have had a connection to ALS like we have. If you lived this, you know how bad it is and until you do, thank your lucky stars if you don’t because it is just an absolutely horrific disease.”
The final annual Cliff Walk will take place this Sunday, September 11, at Buzzards Bay Park along the Cape Cod Canal. The walk will begin around 11 AM, following a brief ceremony to kick off the event. This year’s event will be far more bare bones than previous years: no bouncy houses or face painting for children, no live entertainment, raffle prizes or barbecue. This year’s event is strictly bring-your-own, and attendees are encouraged to bring picnics, blankets, chairs and whatever else is needed to make themselves comfortable.
Fundraising for this year’s walk is not a requirement, but Ms. Singersen hopes that attendees will consider making a donation to the Susie Foundation, which will be the designated recipient of all funds raised from this final Cliff Walk.
“As hard as this is,” Ms. Singersen said, “I’m very, very proud of what we’ve done.”