When three of Betti Lidsky’s four children were diagnosed with a rare genetic disease that would eventually leave them blind, she knew she had to find a way to help them.
It was 1992 when doctors confirmed the diagnosis — Retinitis Pigmentosa (RP) — a degenerative disorder that leaves individuals with severe vision loss, and in many cases, blindness. More than 6 million people in the United States are affected by RP or macular degeneration, another retinal degenerative disease.
Those who suffer from the condition often experience symptoms of night blindness, blurred vision, tunnel vision, difficulty separating light colors from dark and extreme tiredness.
“As parents, we felt that the best way to help them was through research to find the answers,” Lidsky said. “To find those treatments and cures.”
For the past 21 years, Lidsky, 62, her attorney husband Carlos, 63, and family and friends, have been fundraising to support scientific research that will help find a cure for RP and other retinal degenerative diseases. In 2005, the Lidskys’ son Isaac, one of their three children diagnosed with the condition, founded Hope For Vision, a nonprofit organization dedicated to funding research to end blindness.
Hope for Vision’s biggest accomplishment came Friday at the University of Miami’s Coral Gables campus, where 24 scientists from around the country convened to share their latest research at the first Hope for Vision Science Meeting.
“This meeting is monumental,” Lidsky said. “We’re blessed. We’re lucky. They all said yes. They want to help us. They are very devoted to the work they do. They were willing to come and present and share it.”
From 9:30 a.m. to 4:45 p.m., the scientists took turns sharing their research and findings, with only a one-hour lunch break in between. Several areas of research were discussed, ranging from gene therapy and stem cells to implants, microchips and drug therapy.
Dr. Alex Cohen, Lidsky’s son-in-law and Hope For Vision’s vice president, said he hopes a cure for blindness can be found. Cohen is an ophthalmologist.
“Everybody here has been working on different treatments,” Cohen said. “This research is amazing and it is amazing that you have so many people dedicated to eye research, even for a disease that doesn’t affect many people.”
Cohen remembers when his brother-in-law Isaac used to drive a Porsche Boxster before he went blind. Now, it’s different. Isaac can’t drive and he can’t see. “It’s tough to watch,” Cohen said.
The Lidskys’ three children who suffer from RP are: Ilana, 40, Daria, 39, Isaac, 34. Their fourth child, Ronit, does not have the condition.
The three can no longer drive. They can no longer see. But, they still work. Ilana, who has four children, has a PhD in clinical psychology from Yale and fundraises for Hope for Vision. Daria, mother of two, graduated from Harvard, received a master’s in social work from Columbia and has a law degree from Fordham. She works as a social worker for the Jewish Guild for the Blind in New York. Isaac, father of triplets, graduated from Harvard and Harvard Law, became the first blind Supreme Court clerk and now runs a construction company in Orlando.
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.”