Hereditary Neuropathy
Helping those in need
Spin-a-thon raises money to help end neurological disease
By Michelle Sartor
News Editor | June 25 2008
Tenafly - Gary Salmirs of Demarest has taken his passion for health and exercise and turned it into an organization that benefits others. Salmirs started the Ironwill Foundation, based in Englewood Cliffs, this spring to raise money for various causes.
The foundation's first fundraiser, held June 14, was a spin-a-thon at Fuel Fitness in Tenafly that raised money for the Hereditary Neuropathy Foundation. The foundation raises money to fund research for a cure for Charcot-Marie-Tooth disease (CMT), a neurological disease that causes muscle wasting in the hands, feet, arms and legs.
The choice of the foundation was far from random.
Salmirs is good friends with the founder, Allison Moore, and her husband. Moore has CMT and has been raising money through the foundation to find a cure since founding the organization in 2001.
Salmirs' goal with Ironwill was to help on an individual level instead of giving to larger charity organizations where much of the money goes toward paying staff and running the operation. "I want to impact more along the lines of individual people or people I know," he said.
And help, he did.
The spin-a-thon raised $72,000, well above Salmirs' $25,000 goal.
"We worked really hard on it. People really stepped up to the plate," Salmirs said. "They care about the situation people are going through."
Moore said Salmirs is one of the people most dedicated to the cause. "He raised a ton of [money] himself. He was really taken in by the people that have this disease," she said.
Salmirs was one of four participants that stayed on the stationary bikes for the entire six hours of the spin-a-thon.
About 100 people were involved in the event, including Moore who spent three hours on a bike, exceeding her goal of two hours.
She was happy the fundraiser was a spin-a-thon.
"You can have this disease but still sit on a stationary bike. A walk-a-thon would be hard. And running is completely out of the question," she explained.
The spin-a-thon allowed Moore to get involved in exercise again like she was before her CMT diagnosis. She was training for the New York City Marathon and developed a rare cancerous tumor in her leg. Her treatment triggered the neurological disease.
"It was devastating. I went from being an avid runner, skier and roller blader ... now all of a sudden I can't even walk a New York City block without assistance," Moore said. "I was happy to be a part of this with [Salmirs]. I'm energized by this. I've been working out four or five days a week."
In addition to being a good choice for those with CMT, Salmirs also liked the idea of a spin-a-thon because it promotes healthy activity in everyone.
"The Ironwill Foundation came from ironwill racing. It's designed to create events where you sacrifice in a positive way and create a positive fundraising environment. I want to get people that normally wouldn't think about getting in shape and healthy to think about that," explained Salmirs. "The spin-a-thon was designed to raise money for HNF but also empowered people to do something very positive for themselves."
Salmirs is already planning the next event for the Ironwill Foundation, Race Across America, which will take place next June. "It's a national race to raise money for different causes," Salmirs explained. "You go from Los Angeles to New Jersey by bike in eight days. It's a team of four riders that ride 24 hours a day in shifts until you hit Atlantic City."
He plans to raise money for a few different charities with that event. He's also interested in hosting smaller events through the Ironwill Foundation, including "a 10K race or something fun like an obstacle course for kids and adults."
Whatever future plans Salmirs has for his organization, he's already helped HNF. According to Moore, the money raised at the spin-a-thon will go toward funding phase one of a three-phase research project searching for treatments of CMT.
"We need to raise $1.5 million a year to really do what we want to do. Because of the money Gary raised we're able to fund phase one. We weren't ready before this."
For more information about the Ironwill Foundation, visit ironwillfoundation.org. For more information about the Hereditary Neuropathy Foundation, visit hnf-cure.org.