When Mark Chauppetta was in his early 20s, his twin boys, Troy and Andrew, now 23, were diagnosed with Duchenne muscular dystrophy. With a naturally inquisitive mind, Mark immediately dove head first into researching Duchenne. “At the time, the medical community with Duchenne wasn’t like it is in today’s day,” Mark says of his research. “There weren’t many resources out there other than the Muscular Dystrophy Association.”
Mark met Christine McSherry, founder and President of Jett Foundation, for the first time at a Parent Project Muscular Dystrophy conference right after her son Jett was diagnosed. Both being from Massachusetts’ south shore, they became fast friends and allies. For the last 18 years, Mark has been working with and aligned himself with the McSherry family.
Mark started his own foundation, Wheelchair Strong, a year ago and for 15 years prior to that, ran third party fundraisers and events. Much of the money that Mark raises with his events goes to Jett Foundation. “I look at Jett Foundation as our parent organization and we’re one of the children they’re trying to help in a way.”
One of Mark’s main focuses through Wheelchair Strong is making each and every event something fun. “I just think sometimes when you fundraise you have to cater to your strengths and I think it’s good to have different organizations that are raising money in different ways,” Mark says of his strategy. “I wanted to start a foundation where our mission was solely to entertain people while we were advocating and the other thing, the main reason, was to get Troy and Andrew involved.” Mark’s goal was to create a platform in which he could fundraise while making sure his kids got to have fun and feel like they were making a difference as well. Now, the boys use what they’ve learned in trade school to run their dad’s website and help with the foundation’s updates for their “technologically illiterate” father.
Mark says that the greatest benefit he’s experienced personally since getting involved with Jett Foundation is the friendships and support system he’s gained along the way. Having Christine and the rest of Jett Foundation’s community has helped Mark a lot, whether it be getting a question answered or asking for advice from other parents about a situation with one of his boys.
Mark’s biggest pieces of advice for families who are beginning their journey with Duchenne are to live every day to its fullest and not to let your child’s diagnosis stop him from doing anything. Troy and Andrew are now 23, drive a vehicle, own a t-shirt business and work for charity. “There’s no disability in them,” a proud Mark says of his sons. “It’s ability. 100 percent.”