Community Day to Cure FA - Walk and Picnic Sept. 11

NORTH BRANFORD - Mary Caruso and her daughters Sam and Alex Bode invite the community to join them on Sunday, Sept. 11, together with their North Street neighbors and North Branford Congregational Church, for the annual Community Day to Cure FA, a fundraiser benefiting Freidreich's Ataxia Research Alliance (FARA).

Enjoy a leisurely historic walk along North Street and onto a portion of Water Company property, followed by a picnic back at the church on its beautiful lawn, sponsored by Outback Steakhouse of Orange.

Mary Caruso is a founding member of FARA, a national non-profit, tax-exempt organization dedicated to curing Friedreich's ataxia (FA), a degenerative neuro-muscular disorder. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/ biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst between the public and scientific community to create worldwide exchanges of information that drive medical advances.

Sisters Sam, 25, and Alex, 21, were diagnosed with FA about 14 years ago. Like their mom, the sisters have been very active in supporting FARA through the years. The three have issued a press release saying this year's Community Day to Cure FA will be "a gathering of camaraderie where all will join in body, mind, and spirit to bring awareness for Friedreich's ataxia, to celebrate this historic area, and instill the importance of acceptance of all people."

As it progresses, FA compromises fine motor skills, speech, energy production, and heart function. Sam and Alex both now use wheelchairs for mobility. Despite these physical limitations, Sam graduated from Southern Connecticut State University (SCSU) and is working at The Sportsplex in North Branford. Alex is an SCSU junior (Department of Social Work) and was just accepted into the National Honor Society.

Both Alex and Sam have had to face not only FA's physical consequences, but also its psychological impact. They're often exasperated by false assumptions regarding their intelligence, based on their physical impairments, they said.

"Society has a long way to go in understanding that needing accommodations to accomplish what others can do effortlessly should not be seen as 'different,' but seen as a way to fit in with others," said Sam Bode.

Her sister agrees, adding she wished people could learn to look past the physical effects of the disease and see the person inside.

"On the inside, we are just like everyone else," said Alex Bode.

Tickets for Community Day to Cure FA are $25. Register for the walk at the Caruso/Bode home (North Street, next to Atwater Library) at noon on Sunday, Sept. 11. Walk, at leisure, from 1 to 3 p.m.; the picnic runs from 3 to 5 p.m. and offers a raffle, music, surprises, fun, and inspiration. All proceeds benefit FARA. For more information, contact Mary Caruso at meirbode@aol.com.

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