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Yogi and Frank Trainor learned their two sons had Usher syndrome — a genetic condition that was stealing their vision and hearing — when the boys were just going into grade school. The news came as a complete shock. Yogi recalls, “It was devastating. First they needed hearing aids. Now they were losing their vision? I told my husband that unless we find a cure, these boys are going to go blind. This was almost 25 years ago when the disease was not well understood.”
 Their ophthalmologist sent them to Foundation-funded researcher and clinician, Dr. Eliot Berson, of Massachusetts Eye and Ear Infirmary at Harvard Medical School. One of the world’s leading experts on retinal degenerative diseases, Dr. Berson made the diagnosis of Usher syndrome and acquainted the Trainors with the Foundation’s efforts to find a cure.
Early on, the Trainors decided that they were going to do everything in their power to make sure that Scot and Kevin would get what was needed to live well and independently. “For the next 20 years, we worked hard as a family to make sure we accomplished our goal,” says Yogi. “At times it was difficult, we had and have our moments of tears and anger, but that’s natural.”
Since 2000, the complete Trainor family has been involved in the Swing for Sight Golf Tournament, which is held at many top courses in the Boston area. Their current goal is to reach the one million dollar fundraising mark by 2010.
Despite the challenges of hearing and vision loss, both of the Trainor boys have successful careers and lovely partners. Scot, who is 33, also has a daughter, Molly Shea. Kevin is 32 and engaged to be married this June.
Inspired by her older brothers, their sister, Monique, has her master’s degree in orientation and mobility training.
Scot and Kevin have followed in their parents’ footsteps by fundraising for research. They secured live auction items for the Foundation’s annual Shades of Spring Gala.
Yogi credits vitamin A therapy along with eating coldwater fish, as prescribed by Dr. Berson, for slowing the progress of her sons’ vision loss. In a study funded by the Foundation, Dr. Berson determined that vitamin A supplementation can slow vision loss by 25 percent for people affected by certain forms of retinal disease.
But Yogi knows that more and better treatments are desperately needed. “We are praying for a cure,” she says. “Research is the answer but research needs funding, and for the Trainor family, raising money has become a lifetime goal.”
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