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09/10/2021 12:00 AMWhen it comes to raising awareness and funds to support research for treatment and a cure for Friedreich's Ataxia (FA), North Branford siblings Alex and Sam Bode are experts. Last year, when COVID curbed the family's annual FA fundraising gala, they pivoted to present Al & Sam's Drive Up & Drive Out FA Bike Ride on the street beside their North Street home along Route 80. This year, they're organizing the North Street Fair to Cure FA, set for Saturday, Oct. 2, 3 – 7 p.m.
On Oct. 2, a stretch of their street will be barricaded to so that Sam, Alex and their mom, Mary Caruso, can welcome the community to come out and enjoy old-fashioned fun, street-fair style. Ticket sales ($20 adults, $10 for kids under 12) and all other proceeds from the day will benefit non-profit Friedreich's Ataxia Research Alliance (FARA). The air will be scented with delicious smells wafting from the food trucks of Marco's Pizza and Get Stuffed; and filled with live music by acoustic trio Making Waves. There will be a spread of family-fun yard games (organized by Sam) and an outdoor farmer's market filled with offerings from local merchants.
Alex and Sam have also been working to promote the North Street Fair to Cure FA through social media; follow them on Facebook (@LovingLifeCureFA). Without giving away a spoiler, the family could use an assist right now from anyone in the community who may have a rocking chair to donate (or sell, for a nominal fee) for the fair. Those who may be able to help are asked to please call (203) 889-6484.
FA is life-shortening, progressive and devastating disease that Sam and Alex have lived with since childhood.
"Our lives have been ever-changing by the progressive nature of Friedreich's Ataxia," said Alex, speaking via email with Zip06/The Sound. "We have had to learn to adapt to each loss brought on by the disease but have also learned to do what is necessary to hold on to our dignity and keep our zest for life. Part of our life mission is to show others that we are ALL very differently the same. Raising funds to find a cure continues as our focus but we have also taken on the task of showing by example, that we can all be happy and live full lives. With the landscape in society right now, loving each other and accepting each other is so important, we have to learn to be there for each other. If that means always putting ourselves out in society to attempt to make the world a kinder and more accepting place, then that will remain our life goal."
The family shares that both Sam and Alex continue to live very full lives despite the disease impact; as always, buoyed by the love and laughter that fills the Carsuo-Bode household.
FA first arrived in their lives when Sam was diagnosed in 1995; followed shortly by the same diagnosis in his sister. Their mom made a commitment to help treat and find a cure for FA through research, becoming a founding board member of national non-profit FARA in 1998. Caruso was one of a small group of FA family members, together with three of the world's leading FA scientists, to give FARA its start.
The family thanks the many friends, neighbors and community members who have supported their continuing efforts to drive in funds for FARA over nearly 30 years. They hope to raise $25,000 from the North Street Fair to Cure FA. Online ticket sales and donations are being accepted now at www.CureFA.org/NorthStreetFair
Since the founding of FARA, "...FARA has assembled and funded scientists and researchers from all over the world to do top notch research racing for a cure," states the family, in a press release. "When Sam was first diagnosed, there was very little hope or even knowledge of the disease. Since that time, a diverse and deep treatment pipeline has developed which represents the number of therapeutics in development to potentially treat FA."
"As a family we have had to overcome so many obstacles, I will not stop until a cure is found," said Caruso. "I do not want other families to live through what we have had to live through."
The Caruso-Bode family invites the community to attend the North Street Fair to Cure FA, Saturday, Oct. 2, 3 – 7 p.m. on North Street, North Branford. Advance tickets are available now at www.CureFA.org/NorthStreetFair Parking will be available at the North Branford Congregational Church, on Church Street, North Street (north of Church Street) and the Plaza on Route 80. North Street will be closed from Route 80 to Church Street. There is no rain date for this event.