ARLINGTON — Winding Path Gardens in Arlington will host a “Concert in the Garden” fundraiser on Friday, Aug. 1.
It’s for an ailment that many people have never heard of, but whose impact hits close to home for siblings Ryan Thomason, 32, and Jodi Carter, 35, both of whom found out that they have Usher syndrome five years ago.
Usher syndrome is a relatively rare genetic disorder that causes progressive deafness and blindness in those born with it, and Jodi’s husband, Jeremy Carter, started “Vision for a Cure,” a nonprofit dedicated to raising awareness and funds to try and cure the leading cause of deaf-blindness in the United States and Canada.
Although both Ryan and Jodi have worn hearing aids since early childhood, it’s only been since their adult diagnoses that their vision loss has grown severe enough that they can no longer drive. While Ryan is still able to order parts for his company, Jodi switched her sales job for a stint as an office manager at Columbia Distributing.
“Her company is absolutely amazing,” Jeremy Carter said. “They’re our number-one financial sponsor, and when I take her to work, I know that everyone there cares about her.”
Neither Jeremy nor Jodi or Ryan are inclined to think too much about what the future holds, but in the meantime are looking forward to meeting with old friends and new.
“To have a local legend like Pat Cashman emcee our benefit it great,” Jeremy said. “He actually wanted to do it for free.”
Cashman is a veteran radio and television personality whose onscreen stints have included his time on “Almost Live” and “The (206).”
“I’ve had a lot of emotions about this, but I choose not to dwell on it,” Jodi said. “It took a lot of counseling and a lot of positive people to get me to this point, but what other choices do I have?”
“I’ve met people with Usher syndrome who do tactile signing, and even though you don’t want to think that could be you, it’s a possibility,” Ryan said. “I’ve done a lot of soul-searching over it, but I just have to take it one day at a time.”
Tickets for the barbecue and drinks are $60, or $48 with the promo code HERALD. The auction kicks off at 6 p.m., with live music from Br’er Rabbit and Arlington’s singing cowboy, Jesse Taylor.
For more information, log onto www.VisionForACure.com.
