HEY EVERYONE, WE NEED HELP RAISING MONEY TO KEEP THE STUDY IN MIAMI GOING SO WE CAN KEEP THIS CURE FOR LHON 11778a MOVING FORWARD! THE LETTER BELOW WILL GIVE YOU MORE INFO AND THE LINK BELOW WILL TAKE YOU TO A UNIVERSITY OF MIAMI WEBSITE TO DONATE!!!
PLEASE HELP US GET OUR VISION BACK!
I would love to visit with you about your treatment so far. My 22yr old son has been diagnosed with LHON in Jan. We live in Texas and the dr is working on getting the idebone, but says we have to wait and get FDA approved. How and where did you get it?They have refered us to Miami, my name is wendy and my # is 903-724-0729 or 903-478-3288 THANKS
This is Christy Aston, Brian’s Mom. I am sorry to hear about your son. Idebenone is a natural supplement that you can purchase at http://www.smartpowders.com Brian was blind for over 7 years before beginning Idebenone and has had great results from the Idebenone and Purity Product Vitamins. He is so committed to healing himself from the inside out. He has regained some vision and it has certainly made life better for him. He really gave up for many years and it was very difficult as a Mom to feel so helpless. Get into the Gene Therapy Study in Miami if you can, the research on this disease is amazing. 8 years ago there was nothing out there, no research, no information. We held a fundraiser last year to get Brian from Seattle to Miami and to order all the Idebenone and Vitamins. He also set up a FundRazer Acct on Facebook for people who couldn’t attend the fundraiser. We are gearing up for another one in April. I started a Moms of LHON page today as I feel our stories are so different than our son’s & daughters, we need a place also to tell our stories too. Feel free to stay in contact. I will have Brian make me a list of his vitamins and send you. He is now working (first time in 8 years) so he doesn’t have a lot of extra time.