Project 3000 |
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Two Major Sports Figures Team Up to Fight an Important Cause of Childhood Blindness
Chicago Cubs star Derrek Lee and Boston Celtics lead owner Wyc Grousbeck have decided to combine their talents to eradicate a disease that has touched both of their families, Lebers Congenital Amaurosis or LCA. They call their effort "Project 3000" because a central part of their plan is to find every man, woman and child affected with LCA in the United States - about 3000 people.
LCA is an inherited form of blindness that is usually apparent shortly after birth. In most cases, affected children are otherwise completely healthy but a subset of children do have other problems such as learning disabilities, autism, seizures, or kidney disease. At least nine different genes are currently known to cause the disease and as a group these genes are responsible for about 65% of all cases. It is not currently possible to restore vision to affected people although this has been accomplished in animals affected with similar disorders. It is expected that treatments will soon be ready for testing in human beings and for most of these treatment trials knowledge of the disease-causing gene will be important.
The discovery of the genes that cause LCA and the availability of useful tests for disease-causing alterations in these genes are both so new that most affected individuals are currently unaware that such testing exists. Project 3000 seeks to identify every person in the United States affected with LCA and offer them state of the art genetic testing on a nonprofit basis through the John and Marcia Carver Nonprofit Genetic Testing Laboratory at the University of Iowa. For affected families who lack health insurance, philanthropic donations will be used to reduce the cost of the testing.
Project 3000 has five major partners
A project of this magnitude will require many partners. The five groups that have joined forces thus far are:
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The Chicago Cubs |
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The Boston Celtics |
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The Foundation for Retinal Research |
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The Foundation Fighting Blindness |
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The Carver Nonprofit Gentic Testing Lab |
Project 3000 has five major goals:
- Provide hope. Many families affected with Leber congenital amaurosis have been told directly or indirectly that "there is nothing you can do." Project 3000 intends to reverse this message and make it clear that there is much that the 3000 US families with LCA can do as a group to help combat this disease.
- Provide accurate information. By collecting some basic clinical information from thousands of people affected with LCA, doctors will be able to learn how each genetic subtype of LCA behaves over time and will be able to use this information to give parents of newly diagnosed patients 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. Scientists believe that by gathering samples from hundreds of LCA patients whose genes have not yet been discovered that they will be much more likely to find all of the remaining ones.
- Find cures.Trials of new treatments for LCA will require access to subjects affected with specific genetic subtypes of LCA. Even the most common genetic types of LCA occur in less than 300 people in the United States. Project 3000 seeks to identify as many patients as possible with each genetic subtype so that clinical trials will never be slowed by a lack of appropriate patients.
- Make genetic testing the standard of care for LCA.Many insurance companies are currently unfamiliar with the value of genetic testing for LCA. By encouraging thousands of LCA patients to seek payment for their nonprofit genetic tests, Project 3000 intends to demonstrate the value of such testing to doctors and insurance companies across the country.
There IS something you can do - Click here to find out more.