For North Adams firefighter, Muscular Dystrophy fundraiser hits close to home

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NORTH ADAMS >> For city firefighter Travys Rivers, the department's annual fundraising efforts for the Muscular Dystrophy Association are personal.

He is one of the hundreds of thousands of Americans living with a neuromuscular disease.

Rivers is diagnosed with Charcot-Marie-Tooth disease, also known as peroneal muscular atrophy, a neurological disorder that can degrade muscles, particularly in the arms and lower legs. The disorder runs in his family.

"The best way I can describe it is if you sleep on your arm and your hand falls asleep — that's sometimes what it feels like," he said. "But a lot of time [the feeling] doesn't come back, it just like that all the time."

Making their way into town for the Fall Foliage parade earlier this month, motorists were met with local firefighters collecting spare change to raise funds for the Muscular Dystrophy Association, as the department does every year.

The association partners with firefighters throughout the country to raise money for neuromuscular diseases, and has for more than 60 years, according to William Southall, its Massachusetts fundraising coordinator.

This year, North Adams firefighters raised $3,978 and Pittsfield firefighters raised $3,043 toward the association's $1 million annual goal.

While not as debilitating as more serious diseases like Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) or Duchenne muscular dystrophy, Rivers' condition affects about one in every 2,500 people, according to the association.

"My brother and I have it, my kids have it, my niece and nephew have it," he said. "When my son has children, they'll pass it on unfortunately. So I try to go out [and raise money]."

"We don't make a big deal out of it; it is what it is," he said. "It's just one of those things; we hope that eventually some day that somewhere along our genes it will maybe skip a generation."

The Muscular Dystrophy Association of Massachusetts operates seven clinics across the state and provides other support for those with muscular disorders, including summer camps. The majority of funding goes directly to research, however.

"Obviously it's great to fund camp and a lot of other things, but research is what's going to find a cure," Southall said.

All of the change collected on the street quickly adds up, said firefighter Robert Patenaude, who spearheads the annual effort.

He noted the support of NBT bank in managing it all.

"I go over there with a bucket of $650 in change," Patenaude said. "They let me use their coin machine and I turn it all into cash, and they waive all of their fees."

Contact Adam Shanks at 413-496-6376.


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