Jada Lee was 3 years old when she began experiencing discomfort in one of her eyes and, eventually, became blind in that eye. In September of 2006, she was diagnosed with Leber's congenital amaurosis (LCA), a rare genetic disease.As
Derrek Lee and his wife, Christina, learned about LCA, they learned about the gene therapy that was being developed to restore vision and bring hope to thousands of Americans. "Doctors told us that the majority of people living with blinding eye diseases have been told they have no hope," says the Cubs' star first baseman. "That simply isn't true. The more we learned, the more we wanted to help people."So Lee, Boston Celtics CEO and owner Wyc Grousbeck and Dr. Ed Stone, director of the John and Marcia Carver Nonprofit Genetic Testing Laboratory at the University of Iowa collaborated on founding Project 3000. "We're trying to find everyone in this country afflicted with LCA, which is approximately 3,000 people," says Lee. "We're making a genetic test for LCA available to everyone who might benefit."We've been pretty successful reaching children and people under 20. But there are people [ages] 20, 30, 40 and 50 who don't realize there is hope. We're trying to find everyone. We'll get them the tests. We'll try to provide them hope and a cure. We just want everyone afflicted to know that we're reaching out to them."All they have to do is reach out to
www.project3000.org. Thanks to Lee, Grousbeck and Dr. Stone, a door toward the light is available. Grousbeck, who is well-known in the Boston community for his involvement, has a son with LCA, and was brought together with Lee, one of the most respected people wearing a baseball uniform.Project 3000 maintains that people afflicted with blinding eye diseases are beginning to feel empowered, requesting genetic tests, enrolling in studies to advance science and participate in fundraising. The foundation is trying to provide physicians and ophthalmologists with information about the genetic subtypes, as well as fund research; according to Project 3000, the genes responsible for nearly two-thirds of LCA cases have been discovered, more than a one-third of the estimated 3,000 LCA patients in the United States have undergone genetic testing at the University of Iowa and claim that they have located and provided genetic testing to 84 percent of children 10 years old and younger. Lee points to The Children's Hospital of Philadelphia, where a recent study used gene therapy to safely improve vision in five children and seven adults with a specific form of LCA. The study reports dramatic results in restoring vision to patients who previously had no options for treatment.The Lee family learned in the last year that Jada had been misdiagnosed, and Derrek says his 6½-year old daughter "is improving and filled with hope."Derek Lee is reaching out, not for his own publicity, but because he cares about finding thousands of people to whom he might bring eyesight to the blind. At the age of 34, he is making $13 million a year, is coming off a year in which he hit 35 homers, was fourth in the league in OPS and in the ninth in MVP voting. Never mind that he also has three gold gloves on his mantle. But because of all he learned about genetics and impaired vision through his daughter, Jada, he has dedicated himself to bringing hope to people who thought they would never see again."We want to bring hope to everyone who might not realize they can be helped and see again," says Lee. In a sports world that has its blotches, Derrek and Christina Lee offer the most noble of intentions.Hope.