RESEARCH
1. LHON Data Collection Program
When people who carry an LHON mutation share their data in this secure database, they contribute to further research leading to the development of treatments for LHON. Learn more and register at the link below.
LHON.rare-x.org
Videos with more information about the LHON Data Collection Program, and a document with tips and recommendations when completing it, are at the links below.
LHON Data Collection Program Videos
LHON Data Collection Program Tips and Recommendations
2. Donate
Because it is an extremely rare disease, there is only a limited amount of research taking place regarding LHON, so each donation has a large impact on how quickly a cure is found. LHON is a mitochondrial disorder so we partner with the United Mitochondrial Disease Foundation (UMDF). The LHON Project Fund at UMDF is dedicated specifically to supporting LHON research and developing the LHON community. Each donation goes a long way toward changing the future of LHON, and gets us one step closer to a cure. Click on the Donate button to help.
3. LHON Fundraising Events
Fundraising events are a fun way to raise awareness of LHON, and to help find a cure.
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Jeremy Poincenot and his friends created an annual bike ride to support LHON research called C.U.R.E. (Cycling Under Reduced Eyesight) that has raised over $300,000.
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Various people have supported LHON Research through a range of fundraising efforts.
4. Research and Clinical Trials
Funds raised for LHON research have been granted to researchers who have published several academic papers, made advancements in the lab, and are enhancing LHON diagnostic testing.
The Research Process is long and arduous, as explained by Dr. Rustum Karanjia.
Research Process
At the 2019 LHON Conference, Dr. Nancy Newman provided an overview of LHON Research, followed by Dr. Rustum Karanjia with additional LHON Research information.
LHON From Bedside to Bench to Bedside
At the 2018 LHON Conference, various manufacturers provided a Clinical Trials Update, followed by a Q&A with Dr. Nancy Newman.
At the 2016 LHON Conference, Dr. Alfredo Sadun presented information about new treatments and trials.
Doug Wallace identified the first mitochondrial mutation, the LHON 11778 mutation, in 1988. Dr. Wallace spoke at the first LHON Conference in 2014.