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09/07/2017 01:17 PMFor 23 years, North Branford's Caruso-Bode family has been pushing to find a cure for Friedreich's Ataxia (FA), even as the life-shortening, degenerative neuro-muscular disorder has continued to deepen its toll on the family's inspiring, courageous siblings, Sam and Alex Bode. On Friday, Sept. 22, family and friends hope the community will continue to support their efforts, by joining in on an annual night of fun, food and fundraising to help find a cure for FA.
This year's event has the theme "Living a Happy Life" and gets underway at 6 p.m. at Branford's Owenego Beach and Tennis Club. Tickets are $50 per person, with appetizers, dinner by Outback Steakhouse, a cash bar, a raffle and "...many unique participants to entertain guests throughout the evening," according to an event press release. The release also shared Alex Bode's sentiment that the community spirit, friendship, kindness and love experienced at the event each year, "...keeps Sam and I optimistic and really feeling supported."
The siblings were diagnosed with FA as children. Sam Bode was first diagnosed with FA in 1995; followed shortly by the same diagnosis in Alex. Through the years and in many ways, Sam, now 31, and Alex, now 27, have done much to help their mother, Mary Caruso, in raising awareness and funding for research as well as working to promote acceptance of differences. Caruso was also a founding member of national non-profit Friedreich's Ataxia Research Alliance (FARA), which was started in September 1998 by a group of FA patient families and three of the world's leading FA scientists. Proceeds from the Sept. 22 event will help FARA continue to fund research.
In the last 20 years, research has progressed to the point that scientists are now closer than ever to the hope of finding a cure, said Caruso. Recent gains in gene therapy research, with clinical trials as the hoped-for next step, could bring about positive, targeted results. One area of the work, cardiac gene therapy, will zero in on FA-related heart disease, which recently became an issue facing the Caruso/Bode family. The family is also hopeful about news of another promising area of research, which could restore eyesight loss due to FA. The Bode siblings recently lost their eyesight due to the progressive disease.
"These are the losses that really hit home," said Caruso. "Both Sam and Alex have recently had to stop riding their hand trikes outside, [the] one activity they both enjoyed so much. To watch them lose the few activities they enjoy is so difficult."
As always, the siblings are continuing to face FA with "such courage," said their mom. The devastating, progressive effects of the disorder are part of a daily battle usually witnessed by only those closest to the family. Because so many in the community may not see the struggle, Caruso wonders if perhaps some may feel as if being asked to help her family find a cure for FA may be asking too much.
"I have found part of the loneliness of it is, when you have a progressive disease without a cure, I think people like to say, 'Holy Cow -- them again?' You get numb to it," said Caruso. "Unfortunately, that is our life. For us, it's an ongoing battle, and you have to always stay ahead of the game, and you have to stay optimistic. We'd love to say we have a treatment, or we have something to try; but we don't yet. That's the reality of it. But we have try."
Join the Caruso/Bode family for an evening of fun, food and fundraising to find a cure for Friedreich's Ataxia; 6 p.m. - 10 p.m. Friday, Sept. 22, Owenego Beach and Tennis Club, 40 Linden Ave. Branford. Tickets, $50 available online here or by calling (203) 246-8820 or (203) 889-6484. All proceeds assist research supported by FARA, a national, public, 501(c) (3) nonprofit, tax-exempt organization. See more information at www.curefa.org