Searching for update on LHON landed on your video. I have been affected with LHON for 23 years. Back in 2011, When I was living in Florida I found out about the Bascom Palmer research on LHON and signed up for it, went a few times to Miami for the 8 hours testing. In 2012 moved back to Ohio and never heard back from Bascom Palmer. I called them years later and said that they culminated the research and was going to start a trial, but thats was all. I understand how you feel, because I have LHON. All I can say is, stay positive.
I was in the same gene therapy trials by Dr Guy at Bascom Palmer I was there in 2012-2013 but essentially got kicked out because I also have multiple sclerosis and once I was diagnosed with that they said you can't have a neurodegenerative disease and be in the trial I would be a outlier or whatever lol I am filled with joy to hear that you actually got some of those injections and you really had some improvement results! That is absolutely freaking amazing everything I dreamed about plan for and acted on came true just you know for you lol in 2011 I came up with a plan to take a ton of vitamins and 1500 mg/day Idebenone and was able to improve my vision about 30%. The plan was do what I was doing and get the shot and then be able to drive haha still not there yet but trust me I'll get there :-)
Searching for update on LHON landed on your video. I have been affected with LHON for 23 years. Back in 2011, When I was living in Florida I found out about the Bascom Palmer research on LHON and signed up for it, went a few times to Miami for the 8 hours testing. In 2012 moved back to Ohio and never heard back from Bascom Palmer. I called them years later and said that they culminated the research and was going to start a trial, but thats was all. I understand how you feel, because I have LHON. All I can say is, stay positive.
I was in the same gene therapy trials by Dr Guy at Bascom Palmer I was there in 2012-2013 but essentially got kicked out because I also have multiple sclerosis and once I was diagnosed with that they said you can't have a neurodegenerative disease and be in the trial I would be a outlier or whatever lol
I am filled with joy to hear that you actually got some of those injections and you really had some improvement results! That is absolutely freaking amazing everything I dreamed about plan for and acted on came true just you know for you lol in 2011 I came up with a plan to take a ton of vitamins and 1500 mg/day Idebenone and was able to improve my vision about 30%. The plan was do what I was doing and get the shot and then be able to drive haha still not there yet but trust me I'll get there :-)