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for the Blind

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Daughter with Lebers Congenital Amaurosis

Would anyone have the latest info on the human studies that started in April 2007 with gene replacement? It is very promising for people with LCA.

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Re:Daughter with Lebers Congenital Amaurosis

Do a search for Project 3000, their goal is to locate the approx. 3000 children in the US with LCA. They will help pay for the genetic testing done through Carver Lab. I saw a program on LCA a few months ago and found the email address for the Dr. responsible for the clinical trials here in the US her name is Dr. Jean Bennett. She wrote me back herself the same day and gave me the email address of the trial cooridinator in case my son had the specific gene that they are working with. They are still only working with young adults and I think the next age group they hope to try is 8-20. Google her name and see what else you might find. Hope this helps

Re:Daughter with Lebers Congenital Amaurosis

A few months back I went to a local lab to have a blood profile drawn up for my entire family to see if I fit the LCA research. The cost involved was around 1200 dollars for the appointment and the blood work. And I am still waiting to hear back on the results. I believe the lab was named Carver lab who is involved in doing the genetical testing for the blood work to see if the form of LCA I have is the one they are doing research on. Corey.

Re:Daughter with Lebers Congenital Amaurosis

Research Dr. Edwin Stone. He is one of the doctors doing this research. You can also e-mail him any questions you have, and he will get back to you. I sent him some questions and concerns about my 5 y.o. daughter and he got back to me. There is also a website with all his research and a report he prepared. The research is amazing and very promising.

Re:Daughter with Lebers Congenital Amaurosis

I have a yahoo group for blind babies (some parents have children with LCA) Go to yahoo groups and type in blind babies, someone may have answers for you :)

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