Joe Moynihan was initially diagnosed with ALS in 2023. At the time there were only 10 other local people with ALS from Dunkirk to Clymer to Warren, Pa., all of whom he said have since passed away. ALS is not a reportable disease in New York state, so often numbers are not truly accurate, as people have to self-report and most of the time it only becomes known once they pass away and it appears in their obituary.

Moynihan’s walk, known as “Team Joe’s Walk For ALS Families” begins at 11 a.m. Saturday in the pavilion at Lucille Ball Memorial Park.

“In the past 30 months since my diagnosis with ALS, which came only about a year after I finally retired from a decades-long career as a foreman electrician for Frey Electric and proud IBEW union member, I’ve come to know the incredible pain and trauma ALS brings to a family,” Moynihan said. “I’ve progressed slowly and I’m a lucky one, as most people die from this disease within the first two years following their diagnosis. I’ve met and talked with young families in support groups who are in their twenties and thirties who are confronting losing a partner to ALS so young.”

Moynihan said ALS bankrupts families with the cost of medications and home remodels in order to accommodate the losses ALS brings to their lives. Specific ALS foundations work to directly help families like Moynihan’s with these financial burdens, which is why Moynihan said he decided he wanted to help raise money for these various ALS foundations. These foundations help ALS families with things such as putting in ramps and remodeling bathrooms, and overall making life a little more comfortable for those living with ALS.

Joe Moynihan, a local man who was diagnosed with ALS in 2023, and is now organizing a walk in support of ALS families. Submitted photo

“To live with ALS is to be an active witness to everything that makes you human slowly and steadily disappear,” Moynihan said. “It takes away everything without warning or concern. What you could do last week you can no longer do this week. It is a daily battle to try and find joy in your life each day. For the spouses and families who are caretakers it’s usually worse.”

Family members have to actively watch the person they love vanish before their eyes, and have to face doing everything for them like they are a newborn baby, Moynihan said. This happens as Moynihan said the one living with ALS is completely aware of each new indignity that becomes a part of their everyday life.

“We lose our physical capabilities, but our mental awareness remains completely coherent; it’s like living within a shell of your own body as you lose the ability to walk, move your hands or arms, talk, and eventually the ability to eat, swallow, or breathe,” Moynihan said. “For rare ALS cases, they lose their ability to breathe long before their motor function leaves their body, and they pass away within months of diagnosis.”

ALS is an equal opportunity disease, affecting all people young and old, with members of the military and veterans making up the largest percentage of ALS cases, Moynihan said.

“People need to be shown that we are still the same person we were before ALS,” Moynihan said. “One of the worst side effects some people fighting ALS face is their friends and family pulling back out of fear and ignorance of what’s happening. So, not only are they going through all this physical trauma while being fully aware mentally, but they are also losing the people who are supposed to be their support network. Not everyone is blessed with strong familial support systems to care for them, unlike me with my large and fiercely loving family. My hope and wish is for the community to realize how many of our own community members this is happening to or has happened to, and that those community members could use their help whether they realize it or not.”

Joe Moynihan is pictured with his granddaughters, Anna, Indigo and Finley. Submitted photo

One such way to help, Moynihan added, is by helping to fund the ALS foundations they are raising funds for that can directly improve the lives of people living with ALS. In the long term, he said he would love to be able to help influence the perspectives of people for those living with ALS, to better appreciate their strength and courage in facing this debilitating disease that takes everything from them and their loved ones.

“In the end what I’ve learned is that ALS is a thief,” Moynihan said. ” A thief that takes away the life you’ve built and planned for, the friends you’ve had, and it unfortunately creates for your family, and most importantly your partner, a long and slow goodbye. The financial burden of this disease means nothing when it comes to my partner, children, and support network being forced to watch me slowly die, all the while not having time to properly grieve as they have so much work to do on a day-to-day basis as they try to keep me safe. Cherish the people you love, and don’t take for granted the physical abilities you have today, because ALS, and other neurodegenerative diseases, can come along and flip your world upside down like it did mine.”

A Go Fund Me has also been started for the walk, which can be found at www.gofundme.com/f/walking-for-hope-support-families-facing-als. May is also ALS Awareness Month, and a group of people recently went to Washington D.C. and planted over 6,500 flags for ALS patients The flags, Moynihan said, represent the loving and beautiful community they are working to cure and financially help through the Go Fund Me. A flag was also planted there in honor of Moynihan.

Specifically, there are five foundations that Moynihan said have stood by him and his family through this journey: ALS Ride for Life, Shady Strong ALS Awareness, Billy Mead ALS Fund, HARK ALS, and the Live Like Lou Foundation. These foundations have helped to provide grants, home accessibility modifications, and even a generator to meet the daily needs that come with fighting ALS, all resources that Moynihan said helped to bring relief when it was needed most. The family is looking to pay that generosity forward, with 100% of every dollar raised from the walk being donated back to these organizations to continue their mission of helping other families facing ALS, especially young families and families with children. These families, Moynihan said, are the ones who often carry the emotional and financial weight of this disease all at once.

“ALS doesn’t just impact one person–it impacts spouses, children, parents, and entire households,” Moynihan said. “Your donation can help another family stay in their home, afford critical equipment, or simply breathe easier during an overwhelming time. Joining us at our Walk at the Lucille Ball Memorial Park on Saturday May 23, is not mandatory, but if our local community feels moved to make a donation in support of these five foundations who are making a difference in the lives of our own local community, please do donate if you’re able, and help us turn hardship into hope for the next family who needs it.”

Flags recently planted in Washington D.C. to recognize those fighting ALS. Submitted photo

Joe Moynihan’s flag is included among the flags planted in Washington D.C. Submitted photo

A Team Joe group photo, featuring Joe Moynihan and his family, friends and supporters. Submitted photo

A Team Joe group photo.