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International Foundation for Optic Nerve Disease

 
Funding research and disseminating information on causes, prevention and treatment.
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IFOND research | LHON treatment prospects | Mitochondrial Genome Editing | COVID-19 and LHON | LHON talks | Pay it forward | Mitochondrial Regulation | Avoid BAK eye drop preservative, etc. | We experiment with cigarette smoke so you need not. | Viral vector trials | EPI-743 LHON trials | Idebenone LHON trials

Digests: NEI News | Mitochondrial Disease News LHON | ARVO Journals LHON | PubMed LHON | Europe PMC LHON | MRC-MBU news

"Must view" LHON talks

Organised by lhoncanada.ca, see here Dr Alfredo Sadun's 2019 LHON 101 in Vancouver, Canada

Spoiler alert. Progress continues in understanding the disease course, mechanisms and triggers. Anti oxidant and gene therapy after disease onset generally so far is only mildy effective in central vision restoration. Treatment is best started early and run long. He describes dramatic evidence of recovery after resumption of hormone replacement in one post menopausal woman carrier.

The United Mitochondrial Disease Foundation has organized a symposium delivered by the world's leading researchers on mitochondrial disease and optic neuropathy.

None other than Douglas Wallace himself, the discoverer of the mitochondrial genetics of LHON, entertainingly reveals mitochondrial biochemistry, genetics and metabolism as well as the new and extremely important LHON mouse research model. Delightful!

For more detail, see his 2010 paper: Mitochondrial Energetics and Therapeutics for an outline and critique of metabolic therapies for mitochondrial diseases to date and a discussion of the revival of ketogenic diets and a more systemic approach as potential therapy. His paper describes a firm theoretical base to explain anecdotal successes in mitochondrial disease therapy.
Fascinating.

Though cybrid trials of ketogenic diets are complete, we still wait for animal trials and human insulin resistance surveys and human diet trials.

Dr Alfredo Sadun makes an invaluable and accessible contribution regarding the state of the art of clinical aspects of LHON.
Dr Valerio Carelli discusses therapeutic options in LHON. He expertly reviews and explains methods of reducing reactive oxygen species and methods of increasing axonal mitochondria.

The United Mitochondrial Disease Foundation June 2016 symposium in Seattle included another LHON conference organised by Lissa Poincenot. Excellent presentations of treatment research and panel sessions on coping with LHON are posted on Youtube.

In the second talk, Dr. Alfredo Sadun and an expert panel of Dr Valerio Carelli, Dr Patrick Yu-Wai-Man, Dr. Chiara La Morgia, and Dr. Rustum Karanjia bring us up to date. [click on expert names for lists of their published research.]

Note: the posting or linking of research, news, information or forum articles on this site does not mean that any proposed treatment methods are accepted or safe. Material posted here is FOR INFORMATION ONLY, and the INFORMATION CONTAINED THEREIN IS NOT AN ENDORSEMENT BY IFOND. If you seek treatment or preventative guidance, discuss this with your personal health professional.

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The information contained on this website should not be considered medical guidance or professional advice. IFOND is not responsible for errors or omissions in information provided on this site or actions resulting from its use. IFOND does not publish all information from all available sources on optic nerve disease. IFOND is not responsible for the validity of the studies or reviews nor is it an advocate of studies or reviews mentioned on or linked from the IFOND web site. IFOND does not endorse or recommend participation in any particular clinical trial or treatment protocol which may be mentioned on this site. Direct any questions concerning your personal health to your appropriate health care professional.