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.