Billy Moehle’s Family Continues His Legacy of Making an Impact

Billy Moehle by his team sign at an MDA Muscle Walk.

Billy Moehle lived his life with an undeniable passion for connecting with others and making a difference in this world, especially when it came to supporting efforts and research for neuromuscular disease treatments. His hope for the future, faith in progress, commitment to a cause, genuine love for people, and exuberant joy for life were woven into the tapestry of his soul. Born with Duchenne muscular dystrophy (DMD), Billy dedicated his life to sharing positivity, embracing growth and independence, and raising funds and awareness for the future of those in the NMD community. Billy passed away on November 21, 2023, at the age of 33, but his spirit of giving and the light of his love shines on – and his family is making sure to keep that light bright by continuing his mission and honoring his legacy.

A life well lived

One of six children, Billy grew up in a busy, loud, and loving home in Scotia, NY. Billy was diagnosed with DMD when he was three years old, but his role in his family was never defined by his disability. Instead, Billy’s enigmatic energy was a staple in family events and his positive outlook on life served as a model of mindset for his siblings, friends, and family. With a myriad of interests, Billy brought that energy to all of his childhood hobbies: soccer, biking, playing in the pool, slip and slides in the yard, video games, and just talking and connecting with those he loved.

Billy as a young child

“He loved his family and friends,” his brother, Tom Marchesani, says. “Just being one of the guys, one of the kids. Growing up, he did everything. Billy and I would confide in each other and just talk, we were really close with a lot of similar interests. We had a great relationship, and he did with all of our siblings. He was a rock to our family. He was a partner in crime, a confidant, someone to hang out with, a best friend.”

Billy started using a wheelchair in high school but didn’t allow the progression of his disease to interfere with the pursuit of his dreams. After graduation, Billy embarked on a new adventure, attending Mohawk Valley Community College and SUNY IT near Utica. “Something very powerful about him is that he went away to college on his own without an aide or anybody but his friends to help him,” Tom says. “The people he met became people who wanted to be around him and naturally wanted to help him. It’s impressive – he was 18 years old, away at school over an hour and a half from home, living on campus in a dorm room, making friends, gaining independence, and living his life how he wanted.”

The magnetic pull of Billy’s bright personality and “gift of gab” that drew people to him throughout his life allowed Billy to make a positive impact on everyone he encountered. Returning to his hometown after college, he thrived on connecting with others and was often spotted cruising around his neighborhood, stopping to chat with friends and strangers, and cultivating community – sometimes roaming around for so long that he needed to call home for a lift when his power wheelchair battery died.

Billy and his friends at college.

“A lot of people called him The Mayor,” Tom recalls fondly. “He made friends wherever he went. You would be driving home from work and see him chatting outside someone’s house and ask him who they were, and he had just met them and started gabbing. He loved rolling around in the sunshine.”

That easy ability to connect with others served Billy well as he found his life’s passion in raising awareness and funds for neuromuscular disease research.

Man on a mission

Billy first heard about the MDA Muscle Walk in 2010 and quickly formed a team of more than twenty people to participate in the event. Motivated by a desire to create a better future for others living with DMD, Billy recognized the opportunity to contribute to progress towards future treatments by investing his energy and talents in fundraising events that would support critical research.

“Billy wanted to get involved and he always said, “Even if we can’t find a cure for me, I want to do what I can to make sure other families don’t have the same experience.” It was never, “woe is me,” it was always about attacking the day and attacking the challenge,” says Tom, who had also been heavily involved in fundraising during his time at college. “Fundraising together became a way for Billy and me to really connect – and hang out and have fun.”

Billy (left) and Tom (right) at an MDA Muscle Walk.

In addition to continuing to participate in the Muscle Walk, where Billy’s team Willy Wheelz would become the top-raising team for his local walk, Billy and Tom began to plan their own DIY-fundraisers. They wanted to find a way to raise more money for MDA beyond asking friends and family to walk, preferably in a way that would also bring the community together. Billy visited local businesses, hitting the streets to share his story, his experience living with DMD, and his dream of a cure, and asked proprietors to donate to MDA. The brothers organized a variety of fundraising events, from golf outings and bowling events to proceed nights at restaurants and a pig roast at the local fire company. They approached businesses to donate items for raffles, sought donations from vendors for beverages and food, and invited the community to join their cause. “We leveraged a lot of personal relationships, but we were also going to folks that didn’t know us,” Tom says. “We always had a really good turn out with family and friends and people in the community. The community knew Billy and knew us – they really supported us and what we were trying to do.”

Billy and Tom started with one or two events per year, eventually bumping it up to four events each year, raising more than $50,000 for MDA within four years. For Billy, contributing to the future of DMD treatment, albeit a future that he knew he might not see himself, brought meaning and joy to his life. His commitment to sharing his story with others, shining his love of life and positive light on the many connections that he made, and a deep appreciation for the blessing in his own life while feeding a hope for the future, resonate and echo in the hearts of those who knew him.

“I think for him, it was a source of hope,” Tom says. “It was a source of hope, and he knew he was serving a greater good. He knew that we wouldn’t get a cure for him but felt that if we could contribute to finding a cure for someone else then he could live with that. That would be enough for him.”

An echoing impact

Billy’s parents, Mary and Bill, at the 2024 Billy Moehle Memorial Golf Classic fundraiser for MDA.

This year, Billy’s family honored his legacy and followed his footsteps as they continued to share his story and raise money in his name. The first annual Billy Moehle Memorial Classic golf tournament was held on June 22, 2024, hosting 110 golfers and raising just shy of $15,000. Tom found comfort and catharsis in sharing Billy’s story and completing the many event-planning tasks that the brothers used to do together.

“Given our past, it was kind of a natural thought to plan a fundraising event to honor Billy,” Tom says. “As a family, we wanted to carry on his legacy of giving back and fighting for those families that are going through the muscular dystrophy experience and give them hope. Billy always valued that the money we raised could go to help a family, find a new treatment, or send a kid to summer camp. It was an honor to do that in his name and to remember him with friends and family and the community again – to keep his name out there and keep all of the good that he was about at the forefront of their minds, and in our minds too.”

Golf was an easy choice for the event, invoking memories of Billy spending sunny days on the golf course with his dad and brothers. Tom is confident that the people who participated in the event, including friends, family, and even strangers, felt the light, love, and positivity that Billy radiated throughout his life. Being able to talk about Billy and keep his name alive, through planning and MCing the event, was incredibly valuable to Tom as he remembered all of the years of joy that Billy brought to his family and the incredible impact that Billy’s efforts had on the future for others.

Billy’s legacy shines on

“What’s been amazing over the past couple of months is some of the recent announcements about gene therapy and the progress in treatments that MDA is contributing to,” Tom says. “Treatments are coming for future generations, and it was nice to be able to call that out at the event. To share that this is why we are here and what we are supporting. It made it very real that we know our efforts – and Billy’s efforts – are not in vain.”

As his friends and family remember Billy for the loving, positive, outgoing, impactful man that he was, his life and legacy serve as a testament to the lasting impression that a heart of service can have on the lives of others and the tangible hope for a brighter future.