Printer Friendly Version - Caruso-Bode Family to Host 25th Annual Fundraiser to Benefit FARA

North Branford’s Caruso-Bode family members (l-r) Alex Bode, Mary Caruso and Sam Bode invite the public to join their 25th annual fundraising dinner event to support Friedreich’s Ataxia Research Alliance (FARA) Thursday, Sept. 14, at Branford’s Owenego Inn. Friedreich’s Ataxia (FA) is a progressive neuromuscular disease. Twenty-five years after the family’s first FARA fundraiser in 1998, treatment to slow the progression of this disease has finally received FDA approval; while the family continues with the same determination and optimism to find more treatments and, ultimately, a cure for FA. Photo Courtesy Caruso-Bode Family

On Thursday, Sept. 14, North Branford’s Caruso-Bode family will host their signature annual dinner event to raise funds for the Friedreich’s Ataxia Research Alliance (FARA) and hope the public will join them as they celebrate “Living a Courageous Life.” Tickets, $100, are available at give.curefa.org/Courageouslife and must be purchased in advance.

The family’s first FARA fundraiser was held in 1998, when Mary Caruso’s children, Sam and Alex Bode, were first diagnosed with Friedreich’s Ataxia (FA)––a progressive neuromuscular disease. Now, 25 years later, a treatment to slow the progression of this disease has finally received FDA approval, yet the family continues with the same determination and optimism to find more treatments and, ultimately, a cure for FA.

With great excitement, they will return to the Owenego Inn, 40 Linden Avenue, Branford, on Thursday, Sept. 14, when the event will begin at 6 p.m. with hors d’oeuvres followed by dinner and a cash bar. There will be a raffle, as well as silent and live auctions. Attendees will be offered various disciplines of holistic practitioners, all of which Sam and Alex utilize in their lives.

“We are grateful to our practitioners offering their services to our guests. We hope someone will try something new that can help them in their life,” said Alex. “Most of the holistic work we get helps us find our courage to succeed.”

Many obstacles that Sam and Alex faced this year helped develop the theme of Living a Courageous Life.

As Caruso explains, “Sam and Alex find their way to the level of courage they need, and we know everyone struggles in life and each person has to find their level of courage also. We are hoping this year’s theme and the take-home gifts we have for our attendees will help anyone who needs to find their courage.”

The event, organized by a strong and dedicated committee, always promises to give back in gratitude and love. The committee came together naturally, made up of friends and family, and each person holds a unique and strong bond that shines the night of every event.

Committee chairs Michael and Ann Marshal stated, “Our event is a testament to the perseverance and courage of a relatively small committee of people who refuse to give up. They continue to fight to improve the lives of everyone who is impacted by FA. We welcome anyone and everyone to join us in our quest to find an end to FA.”

Caruso added, “The committee is our lifeline; we all work very hard for months to bring people a loving, magical evening.”

Longtime employee and someone who now is considered family, Melanie DeCaprio, is an integral part of this event and the Caruso-Bodes.

“I can’t think of anything more courageous than living life with a progressive illness. Despite obstacles, Sam, Alex, and Mary live their lives with strength and resilience every single day. They make it their mission to not only live life to the fullest but also share that positivity and hope with everyone they come across,” said DeCaprio. “This event is a chance for all of us to come together and raise money for an amazing cause and celebrate living life courageously!”

This year promises the same love and attention to the donors and attendees as the event celebrates all that supporters have helped FARA accomplish, as well as the renewed commitment to the pursuit of treatments and cures for FA.

Please join us in Living a Courageous Life on Sept. 14. Tickets available at: give.curefa.org/Courageouslife.

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuromuscular disorder. About one in 50,000 people in the United States has FA, with most having onset of symptoms between the ages of 5 and 18. Adult, or late-onset, FA is less common (less than 25 percent of diagnosed individuals) and can occur anytime during adulthood.

The signs and symptoms of Friedreich’s ataxia are loss of coordination (ataxia) in the arms and legs; fatigue, energy deprivation, and muscle loss; vision impairment, hearing loss, and slurred speech; aggressive scoliosis (curvature of the spine); diabetes mellitus (insulin-dependent, in most cases); serious heart conditions, including hypertrophic cardiomyopathy and arrhythmias.

The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker or wheelchair by their teens or early 20s.

The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia. FARA’s mission is to marshal and focus the resources and relationships needed to cure FA. Curefa.org