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Cure for LCA is Lee's goal in life
11/21/2006 12:18 PM ET
CHICAGO -- Since Cubs first baseman Derrek Lee first announced the launch of Project 3000 in late September, there has been great excitement and a flurry of activity among doctors and scientists who care for patients with Leber's Congenital Amaurosis (LCA).

And Lee's 3-year-old daughter, Jada, who lost her vision in one eye and prompted the effort, is still getting mail, prayers and support. Someday, they hope to find a cure.

Lee teamed up with Boston Celtics owner Wyc Grousbeck to create Project 3000, a foundation to fight LCA, an inherited form of blindness. The goal is to provide state-of-the-art genetic testing for every man, woman and child who has LCA. People are urged to contact Project 3000 for more information.

"We have already had tremendous interest in this project from all over the world," said Dr. Edwin Stone, a professor of ophthalmology at the University of Iowa Carver College of Medicine and the scientific director of Project 3000. "In the first day alone, the Project 3000 Web site received thousands of hits, and Cubs fans and Celtics fans began sending in support."

For example, one fan, who lives in Japan, first met Lee more than 20 years ago when his father played baseball there. He put a Derrek Lee Cubs jersey up for auction and sent the proceeds to fund the research effort at the foundation.

"She's doing great," Lee said on Monday of his daughter. "You would never know."

Lee and his wife, Christina, are able to deal with their daughter's partial blindness better after meeting 9-year-old Alan Brint, who also has LCA.

"They wondered how children who are blind function," said David Brint, Alan's father and the director of the Foundation of Retinal Research. "When they got to meet my son, you could see the light in their eyes."

Young Alan is a talented pianist and has perfect pitch, said his father. The boy, who's also a Cubs fan, can play whatever he hears.

"[Alan] plays games, has a good sense of humor and he functions around the house," said Brint, who lives in the Chicago area. "I'm not saying it's easy -- it's a lot of work and it's scary. But I think it calmed [the Lees].

"You start entering a world and learning what you can do," Brint said. "You get enough help and say, 'OK, I can do this.' It takes a lot of therapy and help and love."

The Lees admitted meeting Alan helped ease some of their fears.

"You see someone else going through it and they're fine," Lee said. "It's comforting to know it will be OK."

Their fight continues to find a cure.

Since Project 3000 was announced, Stone said that interest has been high among doctors who care for LCA patients. For example, Dr. John Kitchens, a retina specialist in Kentucky, has already organized his partners to help identify all of the patients in that state afflicted with LCA.

Similarly, Dr. Richard Weleber and his staff at the Casey Eye Institute in Portland, Ore., are helping to design a patient questionnaire that will help the team identify patients with LCA from among the tens of thousands of patients who, for a number of other reasons, first experienced severe vision loss during their childhood.

In the Carver Laboratory at the University of Iowa, several additional personnel have been hired and some new robotic instrumentation has been installed to help keep up with the increased number of genetic tests being ordered.

"Working together, sports fans, professional athletes, patients, parents, doctors and research scientists are already making terrific progress in our understanding of LCA," Stone said. "And with all this momentum, we are looking forward to even greater things in the coming year."

Lee is determined to do whatever he can, and may go with Brint to attend the Foundation for Fighting Blindness "Day of Science" event in Orlando, Fla., in January, when researchers gather to talk to constituents. There's strength in numbers, Brint said, and Project 3000 is a huge step in finding people affected with LCA and getting them tested.

"This project that [Lee's] doing will have an enormous impact," Brint said. "A lot of people had been misdiagnosed. There are eight, 10 different genes that can cause this. We want to find out people who have this diagnosis, and we want to do gene screening to find out which genes are involved.

"This is a project we've been trying to do in modest ways for half a dozen years. This will make it happen in short order and the information will be enormously valuable."

This story was not subject to the approval of Major League Baseball or its clubs.


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