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1.  LHON Data Collection Program

When people in the LHON community share their medical 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.

Videos with more information about the LHON Data Collection Program are at the link below.

LHON Data Collection Program Videos

LHON Data Collection Program Tips and Recommendations

2. Donate


Because it is an orphan 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 a LHON Project Fund at the United Mitochondrial Disease Foundation (UMDF) has been created.  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.  Click on the UMDF logo to learn more about the many forms of mitochondrial disease.

3. Create a LHON Fundraising Event


Fundraising events can be a fun way to raise awareness of LHON, and to help find a cure.  For ideas and assistance in running your own LHON fundraiser, contact Lissa at:

  • As an example, Jeremy Poincenot and his friends conduct an annual bike ride to support LHON research called C.U.R.E. (Cycling Under Reduced Eyesight).  They've raised over $300,000 over the years.

      C.U.R.E. Ride​

  • Various people describe how and why they have supported LHON Research through a range of fundraising efforts.


4. Research Grant Results


Funds raised for LHON research have been granted to researchers who have published several academic papers, made advancements in the lab, and will lead to enhancements in LHON diagnostic testing.

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