In 2009, Brian Savo, a husband, father of two children, and an active hockey player for most of his life, was diagnosed with ALS (amyotropic lateral sclerosis), a disease that degenerates the nerves that control muscle movement.
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In 2009, Brian Savo, a husband, father of two children, and an active hockey player for most of his life, was diagnosed with ALS (amyotropic lateral sclerosis), a disease that degenerates the nerves that control muscle movement.
The average lifespan of a person afflicted with ALS is three to five years. Do the math. “I should be gone already and I'm not,” Savo says. Savo explains that, when he was diagnosed with ALS, he asked God to give him 10 more years of life so that he could help other ALS patients come to grips with the disease and continue to live as normal a life as possible.
“There aren't many patients who have the opportunity to use their voice,” he says. “I've been very fortunate. My passion is to open other patient's eyes to what's out there. Your life is not over.”
To that end, Savo has become the national face of ALS awareness, most recently serving as honorary co-chair of the Travelers Championship golf tournament along with former Travelers CEO Jay Fishman, who passed away shortly after the tournament.
The tournament helped raise funds for the ALS Clinic at the Hospital for Special Care in New Britain, where he receives treatment. Savo also sits on the board of the Connecticut chapter of the ALS Association and spends a good deal of time each year lobbying Congress to support ALS research.
But he can most often be found making public appearances to help patients learn to “lean into the disease” and have a positive attitude about it.
“I'm all for research,” he says. “But research is costly. There has to be a balance between research and patient care. It's important to make people aware of how this disease tears families apart cost-wise.”
Born in East Haven, Savo, his wife, Maria, and their children Michael, 10, and Ariana, 7, live in the house he grew up in. His parents Carmen and Thea now live in Florida. He spent his high school years at The Gunnery in Washington, Conn., and the New Hampton School in New Hampshire and attended college at Roger Williams University in Rhode Island, where he majored in business management.
He and his wife currently operate Nantucket Custom Flooring, which he owns. Savo's ambition, growing up, was to become a professional hockey player and be part of the U.S. Olympic hockey team. He keeps an autographed photo signed by the entire U.S. Olympic team that defeated the Russians in 1980. He played the sport from grade school through high school and beyond, as a member of the Connecticut Flames semi-professional team.
Unfortunately, at 5-feet, 6-inches tall and weighing 160 pounds, he had to come to terms with the fact that he was too small for the professional ranks.
Then, in 2007, he began developing muscle cramps, but ignored them for about two years until, one day, he attempted to skate on a pair of roller blades and found that he couldn't stand up. The same thing happened when he tried on a pair of ice skates.
“I was like Bambi out there and I'd been skating since I was three years old,” he said.
Later, during a medical examination, he was found to be secreting naturally produced creatine from his legs and was referred to a rheumatologist, who then referred him to the Hospital for Special Care, where the ALS diagnosis was confirmed.
Some time afterward, Savo was having lunch in New Haven with Bill Auger, who had been Savo's hockey coach, on and off, since he was 8 years old. Auger noticed that Savo had parked his car in a handicapped zone and began giving him a hard time about it until Savo finally told him about the diagnosis.
Auger took it hard.
“Brian, being the friend that he is, it really hit home,” Auger said. “He was just so active that you don't expect it to happen.”
Auger explained the he and a group of Savo's friends wanted to hold a fundraiser to help pay his medical bills and Savo wouldn't have it, because he didn't want to make it about himself.
“He's the ultimate giver,” Auger said, trying to control his emotions. “That's what makes him so unique. He was always sensitive to the needs of others, even as an 8-year-old child. He's everything that I want to be still.”
