"There's approximately 3,000 Americans with this disease, and only 500 have been tested," Lee said Friday. "We need to get everyone with this disease tested because it will help with the cure. They're doing genetic testing and finding the genes responsible for this."
Lee said 10 years ago, people with LCA were told nothing could be done. It is currently not possible to restore vision to affected people, although this has been accomplished in animals affected with similar disorders. The discovery of the genes that cause LCA and the availability of useful tests are both so new that most affected individuals don't know they exist. Funding for the project will not be an issue, Lee said. Grousbeck also has a son who has LCA.
"We want you to get tested," Lee said, hoping to reach people with LCA. "It may not be able to help you, but it could help the next family.
"Our goal is to wipe it out," he said. "We want to wipe LCA out. We want to find a cure."
Lee said Jada is a little different from others with LCA because she can still see out of one eye.
"We look at that as a positive, and ask that everyone continue to pray for a miracle and that she continues to have good sight out of one eye," Lee said.
Lee has not played since Sept. 14 to attend to his daughter. On Friday, he was in uniform and on the bench with the Cubs, but not sure if he'll play in the final three games of the Cubs' season. Having to deal with Jada's situation was a shock to Lee and his wife.
"It's something that's devastating, initially," Lee said. "When you're told that your daughter -- that there's something wrong with your child, it's hard to explain unless you have children. You'll do anything to protect your children. When there's something wrong and nothing you can do about it, it's a tough pill to swallow. As parents we want to do our part. We feel our part is to raise awareness and help other families out. If there's a cure to be found, we want to find it."
Lee thanked all the fans, his teammates, the city of Chicago and the Cubs for their support and prayers during his family crisis. They are working with a specialist, Dr. Ed Stone, in Iowa City, Iowa, and have met researchers and scientists.
All the Lees know is that both parents have to have the gene with the disease, and if they have another child, there is a 25-percent chance he or she would get LCA, too.
"A lot of research needs to be done in this area," Cubs manager Dusty Baker said. "Most of us have never heard of this. We're hoping they find a cure so he can save his little girl's eyesight."
Baker said Lee can play whenever he's ready.
"He said he's over the initial shock, which is the toughest thing," Baker said. "After you figure that, you've got to be proactive and figure out how to cure it. It's a tough situation."