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08/14/2018 04:53 PMPlease join North Branford's Caruso/Bode family and their friends for another annual evening of fun, food and fundraising to find a cure for Friedreich's Ataxia (FA) on Friday, September 7 at 6 p.m. at Branford's Owenego Beach and Tennis Club, 40 Linden Ave.
Appetizers and dinner will be provided by Emily's Catering, and there will be a cash bar. This year will feature an outstanding raffle and select fun live auction items. The evening will focus on celebrating "A Grateful Life," with many unique participants to entertain guests throughout the evening. It promises to share how the family rises above all the obstacles of FA and still celebrates all the wonderful things life has to offer.
Advance tickets, $50 per person, can be purchased online at http://curefa.org/FaForNoBode or by calling (203) 246-8820 or (203) 889-6484. Event proceeds benefit efforts of non-profit Friedreich's Ataxia Research Alliance (FARA) to support research to find a cure.
FA is a life-shortening, progressive and devastating disease. It slowly but steadily robs people of their ability to walk, talk and use their hands. It causes heart disease, diabetes, hearing loss, and blindness. At the time siblings Sam and Alex Bode were diagnosed as young children, the disease was considered so rare that no research was being done.
However, the Caruso/Bode family has been relentless in rallying communities of families affected by the disease to raise awareness and research dollars. Guided by FARA, scientists and researchers from all over the world are funded to do top-notch research and then brought together to share insights to bring us closer to a cure. In the last twenty years, so many strides have been made that scientists are now hopeful that a treatment is possible. The Caruso/Bode family is committed to continuing their part in keeping the momentum moving forward.
In 1995, when Sam was first diagnosed, there was very little hope or even knowledge of the disease. Today is different and each day brings tremendous hope, which helps sustain life for the family. After years of drug development, the FA community is excited to see a new focus on potential drug trials aimed at the root cause of FA in the coming year.
"This optimism is what makes all the hard work of fundraising pay off, seeing potential trials in the near future and a chance to stop the progression," said Mary Caruso, Sam and Alex's mother. "My first promise in 1995 was that I would always offer hope to my children. This yearly event keeps that hope alive and helps my children celebrate life surrounded by support from amazing friends and community."
This event benefits the Friedreich's Ataxia Research Alliance - a national, public, 501(c) (3) nonprofit, tax-exempt organization. For more information, visit www.curefa.org.