I decided tonight that I am going to be calling Monday morning to get A an appointment at the Massachusetts Eye and Ear Infirmary with hopefully Dr Simmons Lessell or Dr Joe Rizzo. I was told they both have experience with LHON.
I also wanted to take this time to say..
Lissa Poincenot is perhaps one of the most dedicated mother's I have ever come across. She has been amazing in her support to me directly since she first reached out to me a week ago. I think she may have declared war on LHON. She is a true force of nature. The site http://www.lhon.org was made by her. Check out her amazing son Jeremy ( http://www.lhon.org/jeremypoincenot/Welcome.html)