Derrek Lee, star first baseman and slugger for the Chicago Cubs, and his wife Christina brought their daughter Jada Ryan into the doctor's office in mid-September to check out the 3-year-old's vague complaint about a pain in her eye. The parents were stunned when the diagnosis came in: Leber's congenital amaurosis (LCA), a rare genetic cause of blindness. The doctors determined that Jada was nearly blind in one eye already and could expect, sooner or later, to lose vision in her other eye.

"You walk in thinking your daughter is going to have something minor and you walk out with some of the most devastating news you're ever going to hear," says Lee.

Enter HHMI investigator Edwin M. Stone, ophthalmic geneticist and authority on LCA at the University of Iowa's Carver College of Medicine, where Jada's parents took her for genetic testing to try to confirm the diagnosis. Her clinical information was also added to Stone's ambitious database—a work in progress that aims to collect information on all of the approximately 3,000 people in the United States with LCA; it now contains data on more than 500. One of them is 14-year-old Campbell Grousbeck, a patient of Stone's and son of another high-profile sports figure, Wycliffe "Wyc" Grousbeck, co-owner and CEO of the Boston Celtics.

Lee, Grousbeck, and other motivated parents and donors are supporting Stone's landmark project, appropriately dubbed Project 3000. Stone says it is the first undertaking in the visual sciences to build a database of information on everyone in the country with a specific genetic disease. The plan is to reach out to pediatric ophthalmologists, visual scientists, and others with a special interest in LCA who are likely to know patients with the condition. "We want to make it clear that a good molecular test is ready to go," Stone says.

Illustration: Grady McFerrin

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