OT - Leber's Congenital Amaurosis - - Please Read

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Please excuse me for using the PSC Support group to announce this, but this forum is one way to contact and offer potential hope to those with Leber's Congenital Amaurosis (LCA). Dr. Edwin Stone has requested help from Iowa Lions, and will be requesting help from the Lions International in a project to identify the 3000 LCA families affected with this disorder. Please let families in your area know of these promising clinical trials & testing. We can make a difference. Project 3000 - Leber's Congenital Amaurosis What: LCA is an inherited form of blindness that is usually apparent shortly after birth. Because the genes that cause LCA have been discovered so recently, families of affected individuals may be unaware that tests exist to pinpoint the disorder. Why: It is not yet possible

to restore vision to affected people although this has been accomplished in animal research. Researchers hope that treatment will be tested in humans soon. Who: Families affected with Leber's Congenital Amaurosis have been told that "there is nothing you can do." Project 3000, spearheaded by Chicago Cubs infielder Derrek Lee and Boston Celtics CEO and co-owner Wyc Grousbeck, both of whom have children with LCA, with the University of Iowa's Carver Non-Profit Genetic Testing Lab, seeks to change that. How: Project 3000 seeks to offer genetic testing on a nonprofit basis through the and Marcia Carver Nonprofit Genetic Testing Laboratory at the University of Iowa. Philanthropic donations will reduce the cost of the testing for affected families without health insurance. Project 3000 Offers Hope.... Provides hope. Many families affected with

Leber's Congenital Amaurosis have been told that "there is nothing you can do." Project 3000 intends to make it clear that there is much that the 3000 US families can do to help combat this disease. Provide accurate information. By collecting some basic clinical information from thousands of people affected with LCA, researchers will be able to give parents more accurate information about what to expect in their child's case. Find the remaining genes. The genes responsible for about a third of LCA cases remain to be discovered. Find cures. Project 3000 seeks to identify as many patients as possible so that clinical trials can be specific for each genetic subtype. Who to Contact: Dr. Edwin M. Stone, MD, PhD Department of Ophthalmology & Visual Sciences University of Iowa 200 Hawkins

Drive Iowa City, IA 52242-1091 Phone: Email: edwin-stone@... Department of Ophthalmology & Visual Sciences Phone: Fax: Refer a Patient to us: 1-

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