Foundation keeps mother’s legacy alive
Kickball Classic planned to raise funds
BEACON FALLS — On a Friday afternoon early in 2010, Ryan Matthews picked up his phone in New Orleans and began a short conversation with his mother Susan.
“It was a 4 ½ minute conversation and she was just like, ‘By the way, I was diagnosed with ALS,’” Matthews said. “After I hung up the phone, I had to Wikipedia ALS. I had no idea what it was.”
He found out Amyotrophic Lateral Sclerosis, better known Lou Gehrig’s disease, is a terminal disease — a degenerative motor neuron disorder that paralyzes otherwise healthy people and results in death within two to five years. Susan first showed signs of ALS in August 2008. She was diagnosed in November 2009 and died at age 57 in April 2011.
Before her battle ended, though, her only son began work on what last month became The Susie Foundation. Ryan founded the nonprofit organization, which is based in the family’s hometown of Beacon Falls, and is putting the finishing touches on its tax-exempt status.
The foundation began as a smaller fundraising effort in 2010, when the family was still actively fighting Susan’s disease.
“We had raised money to support the ALS Association’s Walk to Defeat ALS. We did an online fundraiser and that sort of kickstarted us,” Matthews said. “It helped us realize the potential for what was there, and it went beyond just taking care of our day-to-day things and into helping people around Connecticut.”
After Susan died in April 2011, Woodland Regional High School’s baseball booster club started a scholarship in her name. It was originally funded by the booster club but since then Ryan, who pitched the Hawks to the school’s first-ever title in the 2004 Naugatuck Valley League baseball tournament, has taken over with fundraising.
“It kind of snowballed, as these things often do,” Matthews said. “We started taking additional steps. Instead of just online fundraising, we ran a pub crawl. Earlier this year, I started thinking of how to take this to the next level and get more people involved — something my mom and my family could be proud of.”
In the three years since Matthews began his effort, he and the Susie Foundation have raised about $30,000. All of the organization’s funding has come from donations, not an endowment with which many such groups begin.
Matthews, the foundation’s executive director, will begin taking grad classes at UConn-Hartford in the fall to begin a master’s degree in public administration with a concentration in nonprofit organizations. He hopes to help the estimated 200 families in Connecticut who are dealing with ALS, as well as promote ALS awareness.
“I would like to see it take a more direct role in helping those who have the disease in the state,” Matthews said. “I’m not really sure how yet, so I think that’s going to be unfolding over the next few years. I’m just really excited about incorporating and getting this much support gives us the opportunity to fight ALS head on.”
The next step for The Susie Foundation is the first Susie’s Kickball Classic, a kickball tournament Aug. 10 at the Beacon Falls Recreation Complex. The tournament is still accepting registration for teams of at least nine players, which must have a 2-to-1 male-to-female ratio. Players at least 16 years old are eligible. The entry fee is $20 per player, which will include an event T-shirt and lunch.
“I wanted to do something that people don’t do all that often, that they’re interested in and something they can have fun with to give back to the community,” Matthews said. “It’s very inclusive — young, old, male, female — everybody can play kickball. Not everybody can do dodgeball, 3-on-3 basketball or even a 5K race.”
Matthews said 16 teams are already entered, but there will be no limit on the field. Those interested in entering teams can contact Matthews at (203) 217-4884 or firstname.lastname@example.org.
He hopes to raise at least $3,000 through the tournament, which will go toward The Susie Foundation. It will be the first major event for the newly incorporated organization, and Matthews hopes it will be a beginning of an answer to the question Susan always asked before she died.
“She was very aware of her own death,” Matthews said. “She always asked why. I will never have a complete answer for her, but this organization is like a start toward answering that question for her. It’s a way to keep her alive and transform her experience with ALS into something that creates a legacy.”