All of them are married with children.
“They are married to wonderful people that knew they were going to go blind,” Lidsky said. “They met them with vision, but immediately told them what they had. People get diagnosed with a disease like this and they get depressed and they just give up. This gives hope to people.”
Although Lidsky and her husband do not suffer from RP, they both carry the recessive gene for it, which Dr. Stephan Zuchnar, chair of the Human Genetics Department at UM, discovered. “For 20 years the Lidsky family tried to find this gene,” Zuchnar said. “The gene we thought was so rare is actually the second most important gene in this disease when you are Ashkenazi Jewish.”
Zuchnar said that the gene that causes RP in the Lidsky family is a “fundamental gene that you need in every cell of the body.” However, doctors don’t know what triggers the onset of the disease.
“We don’t know why they are good for 20 years and then all of a sudden they are not, but it is quite typical of these genetic diseases,” he said. “Genetic research can have real life changing impact on families with genetic disease. Genetics is becoming more and more a part of general medicine.”
Hope For Vision has raised millions of dollars and 93 percent of the money is used to fund sight-saving research. The organization only has one full-time employee. The rest of the help comes from volunteers, including friends of the Lidsky family, who have been supporting them since 1992.
“I feel like today we are at the academy awards of science,” Lidsky said. “These people are so brilliant and they help humanity. That’s a great thing to do every day.”
Sara Chikovsky, co-chair of Hope for Vision, knows what it’s like to have a child with vision problems.
Her 30-year-old daughter, Arielle, was diagnosed with Usher’s Syndrome in college — a combination of hearing loss and RP. She has been wearing a hearing aid since she was 2 and although she is already suffering from vision loss, she has central vision.
“She can’t drive, but she can see her face,” Chikovsky said. “In her case, they think the central vision will last a long time. She is a lawyer, married to a lawyer and she has two children. She’s been skydiving and all.”
Chikovsky believes that Hope For Vision’s work will benefit many.
“The eyes have a certain lifespan and that could be shorter than the possible lifespan of human beings so what we are doing here is not just for our children, but for all of humanity,” she said. “You know, with our support, they can cure blindness for everyone.”
Lidsky said her son Isaac used to be OK without being able to see, but since he and his wife have had triplets, he wants to see his children’s faces.
“I want to eradicate blindness,” Lidsky said. “No more blindness, ever. That’s a further goal after this research. There should not be blindness for humanity anymore. The hope is real. It is not if, it is when. We have never been closer.”