Brian: On 5-14-12, my husband was told he has LHON. My question is about Bascom Palmer. We have the paperwork from Ruth describing the study. I was all set go but my husband now has more questions. O ther than following your eyes has to the progress or the decress in eye sight just what are they looking at.
Are they telling you how to take idebenone ? What is the advantage of being in this study other than being at the right place when the gene therapy start.? Is it worth the expense of going for what you get out of it?
Bascom Palmer is study people with LHON that are affected and those who are not affected (carriers). They are working on what could be a cure for many of us. They do not give any advise on Idebenone or any other treatment. They are gathering information on those with LHON to see how their eye sight may change whether for the better or worse. Brian will go for his third trip on July 8th. He was able to see the results through the tests in January from starting the Idebenone and vitamin regiment he began last June. Brian went blind in 2004 and for 7 years did nothing but feel sorry for himself, so when the Idebenone and vitamins began changing his sight he was excited to say the least. He is having a physical this month to test his liver to be sure he isn’t damaging his liver with his high doses of Idebenone. I will have him post the results on this website. I am sorry to hear about your husbands diagnoses but they are so close to making real progress in this disease that there is a lot of hope for all the people who suddenly lose their sight.
I also have a question about the study. I haven’t been able to find much online about human trials. I have gotten the impression from Brian’s videos that there is an upcoming human trial soon to see how the gene therapy works in people. Are they going to be doing actual gene therapy and when is the study taking place. If there is a website with information you can give me I would really appreciate it.
There isn’t much online about the study and when you call the Bascom Palmer Eye Institute they don’t give you a lot of information but they have somewhere around 100 people now in the study. They haven’t started human trials and I believe they need FDA approval before those can begin. There are other people that post about the Miami study on the LHON Facebook page so it’s a good place to look for more info. Brian leaves July 8th for his 3rd appointment in Miami and they just test his eyes and collect information as they wait for approval. Once it is approved they will pull from the pool of people in the study to administer it to.
TheGeneticHouse 
Brian: On 5-14-12, my husband was told he has LHON. My question is about Bascom Palmer. We have the paperwork from Ruth describing the study. I was all set go but my husband now has more questions. O ther than following your eyes has to the progress or the decress in eye sight just what are they looking at.
Are they telling you how to take idebenone ? What is the advantage of being in this study other than being at the right place when the gene therapy start.? Is it worth the expense of going for what you get out of it?
Bascom Palmer is study people with LHON that are affected and those who are not affected (carriers). They are working on what could be a cure for many of us. They do not give any advise on Idebenone or any other treatment. They are gathering information on those with LHON to see how their eye sight may change whether for the better or worse. Brian will go for his third trip on July 8th. He was able to see the results through the tests in January from starting the Idebenone and vitamin regiment he began last June. Brian went blind in 2004 and for 7 years did nothing but feel sorry for himself, so when the Idebenone and vitamins began changing his sight he was excited to say the least. He is having a physical this month to test his liver to be sure he isn’t damaging his liver with his high doses of Idebenone. I will have him post the results on this website. I am sorry to hear about your husbands diagnoses but they are so close to making real progress in this disease that there is a lot of hope for all the people who suddenly lose their sight.
I also have a question about the study. I haven’t been able to find much online about human trials. I have gotten the impression from Brian’s videos that there is an upcoming human trial soon to see how the gene therapy works in people. Are they going to be doing actual gene therapy and when is the study taking place. If there is a website with information you can give me I would really appreciate it.
There isn’t much online about the study and when you call the Bascom Palmer Eye Institute they don’t give you a lot of information but they have somewhere around 100 people now in the study. They haven’t started human trials and I believe they need FDA approval before those can begin. There are other people that post about the Miami study on the LHON Facebook page so it’s a good place to look for more info. Brian leaves July 8th for his 3rd appointment in Miami and they just test his eyes and collect information as they wait for approval. Once it is approved they will pull from the pool of people in the study to administer it to.