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One Family Is Raising Awareness of a Blinding Disease That Few Know About



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Isaac Lidsky has been busy, busy, busy. Recently he marched down the aisle to receive his law degree from Harvard University. Three days after that and about an hour's drive away, he pronounced his I do's with longtime girlfriend Dorothy Johnston at Aldrich Mansion, a French chateau overlooking Narrangansett Bay in Rhode Island.

Along with the rabbi and the priest, the chuppah and the shattered wine glass, Lidsky brought a trusted helper to the celebration, a 56-inch walking cane that has guided him through this past year's flurry of exams and rehearsals. It is the most recent clue to the 24-year-old's progressive vision loss.

The cane, however, is also a symbol of resiliency, hope and what he calls - paraphrasing the words of a friend - the faint line between acceptance and surrender.

I never leave the house without it,'' he says.It's made my life so much easier because people are now aware of my vision problem. I used to have to walk hunched over looking for obstacles, and I'd have to frantically scan back and forth to make sure everything was clear. No more.''

Almost a dozen years ago Lidsky was diagnosed with retinitis pigmentosa (RP), a degenerative eye disease that limits a person's night and peripheral vision and can eventually lead to blindness. About 6 million people in the United States are affected by RP or macular degeneration, another retinal degenerative disease.

Back in 1992, two of his three older sisters were also found to have RP, and the family was devastated. Turns out, their parents, Betti and Carlos Lidsky of Sunny Isles, each had a recessive gene that meant a one-to-four chance that a child would have it.

It took me three years really to accept it,'' says Carlos, a personal injury lawyer.I couldn't work for a year and half.''

But in characteristic Lidsky fashion, the family pulled itself together, assessed the situation, and devised a plan.

We're very solution-oriented,'' says Daria Zawadski, the second oldest but the first to be diagnosed with RP.We put our belief in science. We knew there could be a cure, that it wasn't a question of if, only of when with the proper funding.''

To this end, Betti Lidsky founded Heart Sight Miami, a local chapter of the Foundation Fighting Blindness. Since 1995 she and Carlos, along with a dedicated committee of friends, relatives and people who have been touched by degenerative eye disease, host an annual fundraiser that attracts 400 to 600 people. Over the years they've raised millions of dollars. (This year's Party with a Purpose, a black-tie affair, is scheduled for Sept. 18 at the Westin Diplomat Resort & Spa in Hollywood.)

Betti and Carlos have been the driving force in South Florida,'' says Pam Huff, Florida events coordinator for the foundation.They have been instrumental in moving this forward. We're fortunate to have their commitment and the commitment of their committee.''

Betti's work was recognized in 2002 when she received an Unsung Heroines Award in Washington, D.C., an annual recognition of women who have done exceptional community work. Each recipient must be nominated by a member of Congress. Betti was nominated by Rep. Ileana Ros-Lehtinen, R-Miami, a founding member and co-chair of the Congressional Vision Caucus.

It's my life, it's my mission,'' explains Betti.I know I must find an answer, not only for my children but for all the others, too.''

She attributes the local chapter's success to a devoted core of volunteers who have spread the word. You discover that people have a lot of good in them,'' Betti says.They want to help. I live in gratitude for these people. Instead of seeing the glass half full, I see it overflowing.''

The Lidskys' goal, like the foundation's, is twofold: To raise money to fund research and to create an awareness of a disease that few know about. Already they've witnessed considerable progress. The couple talks excitedly about Lancelot, the first dog to have his vision restored through gene therapy. They explain how, when the children were first diagnosed, scientists hadn't isolated one gene associated with the disease. Today, they have found several.

Researchers also have begun to conduct clinical trials on a drug that slows vision loss. The trial's second phase is scheduled to begin this month.

Our knowledge grows exponentially,'' Carlos says.The answer is there. We know it's just right around the corner, and it's what gives us so much hope.''

The Lidsky children take their cue from their parents. They remain undaunted by the disease that has curtailed their evening activities and taken away their ability to drive. The extent of their achievements is breathtaking. Isaac, for instance, lived in California and performed in the TV sitcom ``Saved by the Bell'' for two years after his diagnosis in 1992, graduating from high school at 15. He then took off for Harvard, finished at 19, and founded an Internet advertising company with Joe Zawadski, his sister Daria's husband. He eventually headed back to school - law school - and has lined up a one-year clerkship with a federal appellate judge in Delaware. His dream: work for the Department of Justice specializing in cyber law.

There's no doubt it's scary to lose your vision,'' he says,but honestly, the main effect RP has had on me is to make me realize how fortunate I am to have what I have. I wouldn't trade places with anyone - well, maybe with Bill Gates.''

Typical Lidsky humor. Ilana McGuinn, 30, the eldest of the four, lives with husband Patrick and two daughters. Her undergraduate degree is in psychology from Cornell, her doctorate from Yale. She gave up driving about a year ago - a bitter pill,'' she calls it. Then, just as quickly:I take a lot of pride in my family. I think this is part of our journey, part of our destiny. Maybe my family was given this so we would work hard to help find a cure.''

Daria, 29, has recently started a year-long maternity leave. With a degree in psychology from Harvard, a master's in social work from Columbia and a law degree from Fordham, she works for a nonprofit as a social worker in New York public schools.

The youngest of the Lidsky girls, Ronit Cohen, is the mother of a 9-month-old and is completing her medical residency in New York. The only one who doesn't have RP, she wants to specialize in child psychiatry.

They're amazing people,'' she says of her siblings.There's not a day that goes by that I don't think of how much they've done and what they've taught me. I realize that you never know what will happen from day to day, so you have to enjoy everything and be optimistic.''

More than 9 million Americans suffer vision loss from retinitis pigmentosa (RP) and a broad spectrum of retinal degenerative diseases, including macular degeneration and Usher syndrome. Here's an explanation of the conditions:

- RP and Usher syndrome are inherited diseases commonly diagnosed during childhood or young adulthood. RP causes severe vision loss that can lead to blindness. Children with Usher syndrome are born with varying degrees of deafness and later develop RP.

Macular degeneration is the leading cause of legal blindness in adults over age 55.

The Foundation Fighting Blindness has help funded several scientific advances to fight retinal degenerative diseases:

- Gene therapy has restored vision in dogs born blind with a severe form of RP.

- Scientists are developing an implantable drug delivery device that can slow vision loss in an animal model of RP.

- Researchers have begun human clinical trials to test the safety of implantable retinal prosthetic devices to restore vision.

- A research center at the University of Utah has slowed vision loss by transplanting genetically engineered retinal cells. These could represent a safe source of donor tissue for use in transplantations.

- Geneticists have mapped more than 100 genes with mutations causing degenerative eye diseases. Of these 100, more than half have been isolated and cloned.

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RESOURCES

Where to get more information about retinal degenerative diseases:

- www.FightBlindness.org. The official website of The Foundation Fighting Blindness, named one of America's 100 best charities by Worth magazine.

- www.heartsightmiami.com. The website for Heart Sight Miami, the national foundation's local chapter, founded by Betti and Carlos Lidsky.

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(c) 2004, The Miami Herald. Distributed by Knight Ridder/Tribune News Service.

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