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Brian Savo (right) has been an advocate for ALS (amyotrophic lateral sclerosis) since shortly after his diagnosis 10 years ago. He’s shown here serving as honorary co-chair of the 2016 Travelers Championship with the late Jay Fishman, former Travelers chief executive. (Photo courtesy of Brian Savo )
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Brian Savo, father of two, husband, local business owner has ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease), but ALS does not have him. He was diagnosed in 2009 with the progressive disorder and was told he had only two to five years to live. His wife Maria was six months pregnant with their second child and his world had just been turned upside down.
That was 10 years ago.
Brian attributes a strong family and support system, the Hospital for Special Care and Doctor Kevin Felice, a never-give-up attitude, and the joy he gets from giving back, as the things that have helped him beat the odds.
“As soon as I found out I had this, I got involved,” says Brian. “At first I was like a deer in the headlights, but I just figured the faster I digest what’s happening to me, the faster I can deal with it.
“I try to come from a mindset of positivity, and I work hard every day to help other families going through the same struggles,” he adds. “This disease is an emotional roller coaster. One day your body works and the next day it just doesn’t, but you can’t surrender. You can do things to make yourself more comfortable and your life a little easier, but you can’t surrender.”
Approximating that it costs about $250,000 a year for someone to live with ALS, Brian has turned his focus to help raise needed funds to be used for patient care and further ALS research. Besides continuing to work at the store he and Maria own, Nantucket Custom Flooring in Branford, and being a dedicated, hands-on father to his 11 year-old son Michael and 9 year-old daughter Ariana, Brian spends a lot of time fundraising.
He has been a board member of the ALS Association for the past six years, been recognized as Volunteer of the Year by the ALS Connecticut Chapter, participates and helps promote every ALS walk and fundraiser in the area that he can, and was the honorary co-chair of the 2016 Travelers Championship with the late Jay Fishman, former Travelers chief executive. Brian has continued to help coordinate the event even after his friend’s passing and has successfully helped many other ALS patients attend the event in style, under an air conditioned tent, with easily accessible seating.
In addition to all this Brian, who continued to coach the North Haven Hockey team for four years after his diagnosis, also regularly travels to Washington D.C. for ALS advocacy to speak with senators about funding efforts. His daughter spoke in D.C. this year to a room full of congressman about the disease that has changed her family’s life forever.
“I am so incredibly proud of her and my son, my whole family. I couldn’t do this without them and their support,” Brian says. “They help me get up, get dressed, get showered and fed every day. They are my caregivers.”
Brian is trying to help get laws changed such as waiving the five month waiting period for Social Security benefits as well as increasing funding for the ALS National Registry and the National Industry of Health.
“It’s not about me,” he says. “It’s about helping others, giving them hope and putting a smile on their face. It’s truly good for your heart and soul to do something for someone else and the emails and texts I get from people keep me going.”
An athlete his entire life, playing football, hockey, and lacrosse, Brian began to experience some strange symptoms that he brushed off at first as signs of getting older. He was getting muscle cramps in his legs and his toes were curling up, he had a limp and getting up on his tippy toes was getting progressively difficult. At the time, he was exercising regularly and only had 11.5 percent body fat.
“It just didn’t make sense,” he says. “But, I didn’t really think anything of it, but it kept happening and eventually I went to the doctor, they did the tests...I was alone when they told me I had ALS. It was like a punch in the stomach, but now I work to help others. I tell them that you can live with ALS, stay strong and be positive.
“You have to live life to the fullest every day, every minute, be thankful and keep on going, I mean, healthy people die every day also, so have hope!” he says. “Keep your head up!”
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