On this page I will be posting a video blog of my journey, working to get my sight back by taking Idebenone and Supplements to try to help my vision as much as possible. I will also be reporting about the Gene Therapy Study in Miami FL where they are working on a real cure that I am on my way to! So stay tuned, subscribe to the RSS feed to get the updates immediately and follow my journey of defeating this horrible disease.
LHON and My 1 Year Update
LHON and My 11 Month Update Part 1 of 3
LHON and My 11 Month Update Part 2 of 3
LHON and My 11 Month Update Part 3 of 3
LHON and My Idebenone Treatment
LHON and My Vitamin Therapy
http://www.youtube.com/watch?v=c6xGCv5CET4
LHON and My 7 & 8 Month Blog Update
LHON and My 6 Month Blog
LHON and My 3 Month Blog Update Part 2
LHON and My 3 Month Blog Update Part 1
LHON and My 1st Month Blog Update
LHON and My King5 News Story
TheGeneticHouse 
Brian,
Hello, I really am impressed by your website. My son has lebers lhon, same mutation as you, at 17 years old. He is now 20 and finishing his 3rd year of university, in legal studies, with hopes of becoming a lawyer. I constantly research the web and while I am aware of most of these developments, but it’s good to get your perspective. Have you seen any difference in your vision with idebedone. Andrew took this for 3 months and saw no results and gave up.
It is discouraging but hopefully gene therapy will bring results. Thank you.
Lynn
Hi Lynn first I want to thank you for commenting on my site it’s the first of hopefully many to come! I have not yet begun anything. I only found out that there was even information on LHON two months ago! That is amazing that Andrew is defeating his challenges in life and becoming a Lawyer!! From all of my thoughts on taking Idebenone I think that it may take longer than 3 months for any one particular person to see results, we are all different and not everything works the same for all of us. I am trying to brace my self for the same type of experience, I can only try to do all I can to work towards as much sight as possible!! I will hopefully be on my way to Miami to join the Gene Therapy Study I have great feelings of hope for this to be an amazing advancement even though I don’t know that much about it YET!
Hello Brian, my son is 16 years old and was diagnosed with LHON over the summer. Scary for me, not so much for him. His genetic results came back negative for any of the mutations they were testing for, and this also excludes him from the Miami study. more power to you!
Brian, my son who is 13 has optic atrophy. I have even made the trip to china for stem cell injections for him. I am interested in the new idebedone drug to try. Is that something that has to have a prescription. He had some small improvements but im always looking for more. I actually have two children with this, one 13 and one 10 year old.
Brian purchases Idebenone from http://www.smartpowders.com You do not need a prescription as it is a supplement. I don’t know much about optic atrophy or how it differs from LHON but you could research it and see if there are simularities.
How much does he take per day?
Brian takes 1500mg a day. Here is a link to info on Idebenone and there are other links on the Knowledge Library Page. http://internaf.org/ataxia/Idebenone_desc.html
Good evening, health you Martina from Czech Republic (Europe). Please I would like to know how far research in Maimi gene therapy. I wish you much strength Martina