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09/15/2016 10:17 AMBranford, CT— Join the Caruso/Bode family once again for an evening of fun, food and fundraising to help find a cure for Friedreich's Ataxia (FA), Friday, Oct. 14 from 5 p.m. on at Owenego Beach & Tennis Club, 40 Linden Ave. in Branford.
There will be appetizers, a Texas barbecue dinner, cash bar and a raffle. Billy T and The Extra Special Guests will provide live music, and this year guests might even have a private reading by internationally known psychic Jeff McBride. Comedian and magician John Cap will entertain guests throughout the evening.
Tickets are $50 and can be purchased in advance by calling (203) 640-4045, (203) 246-8820 or (203) 889-6484.
Friedreich's Ataxia is a life shortening, progressive and devastating disease. It robs people of their ability to walk, talk and use their hands appropriately. It causes heart disease, diabetes, hearing loss and blindness. At the time North Branford siblings Sam and Alex Bode were diagnosed as young children, the disease was considered so rare that no research was being done.
However, their mom, Mary Caruso, has been relentless in forming communities of families affected by the disease. They have banded together and all moved forward raising awareness and research dollars.
Guided by the Friedreich's Ataxia Research Alliance, scientists and researchers from all over the world are brought together and funded to do top-notch research, racing for a cure. In the last 20 years, so many strides have been made that recently scientists announced they are hopeful that a cure can be found.
In 1995, when Sam Bode was first diagnosed, there was very little hope or even knowledge of the disease. Today is different. Today brings tremendous hope and awareness to the importance of living life to it's fullest, despite the obstacles of FA. Work done on potential through-gene therapy is the newest hope. Funds from this year's Branford event will be earmarked for potential trials within 2017.
There is also new hope to restore eye sight, which has been the most recent loss for both sisters.
"These are the losses that really hit home, as both Sam and Alex have recently had to stop riding their hand trikes outside the home," said Caruso. "This was one activity they both enjoyed so much. To watch them lose the few activities they enjoy is so difficult."
Not only do these annual fundraising events bring about an awareness of the disease and raise money to speed the research along, but they also bring together a wide community of people who care, with everyone welcome. It's an uplifting evening filled with the spirit of friendship and kindness and love, emphasizing the dignity and respect for all people.
"Our annual fundraiser keeps Sam and I optimistic and really feeling supported," said Alex Bode. "We really enjoy these events."
The Friedreich's Ataxia Research Alliance is a national, public, 501(c) (3) nonprofit, tax-exempt organization. See more information at www.curefa.org.