International Foundation for Optic Nerve Disease
P. O. Box 777, Cornwall NY 12518, USA

Idebenone treatment for LHON

A randomized placebo controlled study published in the journal Brain showed idebenone to be an effective treatment for LHON. Idebenone is a synthetic benzoquinone, co-enzyme Q10 like substance, potent antioxidant and inhibitor of lipid peroxidation, which also interacts with the mitochondrial electron transport chain and facilitates mitochondrial electron flux through by-passing complex I. It was shown in the study to be well tolerated and have modest effectiveness in about half of LHON patients treated. The result confirms retrospective treatment data soon to be published. People treated early in onset and for prolonged periods were likely to benefit most.

LHON treatment trials

IFOND scientific members are involved in new LHON treatment trials using the Vitamin E metabolite substance, Alpha-tocotrienol-quinone, coded EPI-743, a potent antioxidant. Find Dr Jerry Sherman's presentation of his optometric case findings in this promising open label study in Review of Optometry Case 38 Leber's Hereditary Optic Neuropathy

Psychological Impact of LHON Study

You are invited to participate in a Leber's Hereditary Optic Neuropathy Research Study. To be eligible you must 1)Be Over 18 Years Of Age, 2)Have Vision Loss Due To LHON, & 3)Have Been Diagnosed With LHON. This study seeks to examine the relationship between social support (from friends, family, and significant others) and the impact of vision loss in people with LHON. All your responses will remain anonymous and confidential. Please access the following link to take the survey and to get more detailed information about the purpose of the study and the procedure: http://www.research.net/LHON If this website is not accessible for you and you still want to take part in the survey, accommodations can be made by administering the questions orally over the telephone. Please contact Jonathan W. Dator, the Principal Researcher if this is the case via email at: Jonathan.Dator@student.shu.edu or by phone at: (203)-512-8428. Thank you for taking the time to consider participating!

Fundraising

IFOND gratefully acknowledges all our generous donors. For years a large portion of our funding has been from the IFOND annual golf outing. This happy event will continue. Email us if you are attending. Recently we have also been getting a steady but modest flow of online donations from many sources. In July 2010 we were graced with a large donation from The Welcoming Club of Garden City. See our fundraising section for further details and recognition. Without your generous giving our important research would not happen.

Brazil LHON Field Trip Reports

With your support, IFOND sponsors research on the world's largest Leber Hereditary Optic Neuropathy [LHON] pedigree. In our projects section Dr Alfredo Sadun, the study co-ordinator, has summarized the studies to date since 2001 when they began with IFOND sponsorship. We have pushed the frontiers of knowledge about Leber Hereditary Optic Neuropathy. Please donate to IFOND to see this and other worthwhile IFOND work continue.