Each May during ALS Awareness Month, we come together to shine a light on people living with ALS. People like Matt, who is determined to make as much of a difference as possible for the ALS community even as he faces the challenges of the disease.

To say Matt Fleming liked to run is kind of like saying that Julia Child liked to dabble in the kitchen a bit. Matt liked to run, a lot. Like completing seven marathons and many half marathons a lot. But it wasn’t just the running, but the running mindset that drove Matt. “(Running) reinforced in me the lesson that you can set your goal, develop a plan, work hard, and persevere to accomplish that goal,” Matt said. “That mindset has helped me throughout my life.”

Matt brought that lesson to his career as a mechanical engineer before moving into management. Develop a plan, work hard, accomplish that goal. He also brought that lesson to another passion project of his: the challenging but rewarding choice to bring rescue dogs into his home to give them another chance. Develop a plan, work hard, accomplish that goal.

Given his passions, maybe it’s not surprising that the first time Matt noticed something wrong was on a run in late 2022. “I noticed that my left leg was heavy and hit hard when I took a step. I had no idea what was causing this,” Matt said. “I figured that I was just out of shape and went out for another run. Eventually I developed pain in my right knee from overcompensating.”

Matt sought out physical therapy to help with his knee, where he heard something ominous. “During a session my therapist turned to me and said ‘I don’t think that I can help you. You need to see a neurologist.’” Matt did see a neurologist, and was diagnosed with ALS in May of 2023. “I pursued second and third opinions with each neurologist confirming the diagnosis.”

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Just three months before being diagnosed Matt had been promoted to plant manager of a facility with 400 employees. Five months after his diagnosis he had to stop working. “It was completely devastating,” he said.

After being diagnosed, Matt reached out to the ALS Association, not only for help in navigating the disease, but also to offer his help in any way he could, be that through volunteering or to help raising awareness about ALS and the people living with it.

Because while ALS has taken away many of the things Matt has always held dear, it has not shaken his desire to develop a plan, work hard, and accomplish that goal. “As I have adapted to life with ALS, I have had to shift my interests,” he said. “Through self-reflection I have determined that I want to make as much of a difference as possible with the time I have left. This is my newest passion.”

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Matt can no longer run as he used to love to do, but that doesn’t mean he’s stopped moving forward, or has stopped pushing others to move forward in the fight against ALS. “The ALS Association has been amazing to work with. However, this is a disease that is still largely unknown and incurable,” he said. “We need to keep working to raise the necessary funds to support living with ALS, to advocate for legislative changes, and to support research.”

Thank you, Matt, for allowing us to share your inspiring story and for all the amazing work you are doing for the entire ALS community.

Please join us this month and show people living with ALS and their families they are not alone. Learn more about ALS and find out how you can get involved HERE.

Join us this summer at ALS Nexus, a conference featuring a variety of sessions that focus on the latest developments and opportunities in research, care, and advocacy. Learn more and register TODAY!

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