JAMESTOWN, NY — An Ashville couple is rallying the community behind those living with ALS and their families, a subject they're familiar with after one of them was diagnosed with the disease in 2023.
“I started feeling weakness in my right leg, and I, I had pain when I started breathing," is how Joseph Moynihan remembers the first signs of ALS. In November of that year, he officially received the diagnosis. "Since then, I've progressed to the point where I need braces on my legs to walk, and you know I drop things a lot, and for me, the biggest problem is my pulmonary and my breathing," Joseph told WKBW.
However, despite the difficulties, he didn't let the disease stop him.
"I built ramps. I built myself a bedroom down here (living room), which is basically set up like a hospital room, and I just planned everything that I possibly might need, and I continue to do that today." He continued, "It's all about adapting and planning."
Following his diagnosis, Joseph and his wife Karen began meeting with others like them. The shared experience is what inspired the couple to form Team Joe, which they would represent annually at Buffalo's Walk to Defeat ALS. Now, they're taking Team Joe and partnering with other ALS advocacy groups.
On Saturday, Team Joe's Walk for ALS Families will take place at Lucille Ball Memorial Park in Jamestown beginning at 11am. And already the fundraiser has earned over $11,000 in donations.
"We started with the goal of $10,000 to be raised, and I thought that was a very aggressive goal," Joseph said. The amount will be distributed to families to help cover medical expenses and other costs related to care for the disease.
According to the ALS Association, medical expenses in the first year following an ALS diagnosis top $47,000.
"When it comes to ALS above and beyond all the medical expenses, doctors, pharmaceutical needs, those types of things, just getting a house ready for somebody who's now moving from ambulatory into a wheelchair is huge," Karen told WKBW. "Things you don't think about, modifying bathrooms, opening wider doorways. There's a lot to it, a lot to it."
Joseph added, "It might be $1,000 - $1,500 dollars to put in a ramp for somebody. You're talking about helping, you know, 5 or 6 families that don't always have the ability to do it. A lot of people live paycheck to paycheck, so it's incredible." He continued, "I'm so blessed to have, you know, a good family, a good network of people around to support us."
Besides the monetary donations, there are a few other things the Moynihans hope guests at the event take away.
"I think the biggest thing people could do is just when they hear somebody has ALS, is try to support the family as much as possible," Karen said. Joseph added, "It's easy sometimes for people to say, ' Hey, let me know if you need something."
"Just go over there with a pie, go over there with a cake, go over there and cut their grass. Do something, be more proactive. There are a lot of terrible things and diseases in the world. So, just take it and find joy." He continued, "Every day to me, the most important thing is just continue to find joy, and I continue now to try to help people and give my services. I was an electrician, so I still try to help people."
WATCH: ‘Team Joe’ rallies Chautauqua County to support local families living with ALS
