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This website should be considered general information only and should not be considered medical guidance or professional advice. Always direct any questions concerning your personal health to your doctor or another appropriate health care professional.

CLINICAL TRIALS FOR

LHON PLUS AND LHON

LHON-PLUS/MS Survey

Are you affected by LHON, LHON PLUS, LHON-MS, Multiple Sclerosis or Hardings Disease?  Do you carry a LHON mutation and have neurological symptoms such as tremors, ocular pain, seizures, muscle weakness, or bladder spasms? Or do you know anyone else who would answer yes to either of these questions?

If so, please complete this simple survey or invite the individual(s) that you know to do so.  It should take no more than 10 minutes. 

 

 

This survey is being conducted by Dr. Andrea Gropman, a neurologist who specializes in mitochondrial diseases at Children's National Medical Centre (CNMC), and Dr. Anne Chiaramello, a research scientist at George Washington University School of Medicine and Health Sciences.  They are investigating the potential therapeutic approaches for mitochondrial diseases.  They have an on-going collaboration about a pre-clinical study that they want to conduct in the Spring of 2019.  Those who may qualify for this study as identified by this survey will be contacted by the researchers to visit their clinical site this spring.  This will be a rare opportunity to have this disease analyzed at a molecular and functional level.  

Thank you for taking the time to fill out this survey and sharing as appropriate.

LHON Administrators

Dr. Gropman (CNMC) and Dr. Chiarmello (SMHS)

Mitochondrial Myopathy trial (MMPOWER 3) by Stealth Pharmaceuticals

MMPOWER-3: is a phase 3 randomized trial to evaluate the efficacy and safety of elamipretide in patients with primary mitochondrial myopathy followed by an open-label treatment extension with elamipretide.  If you or a loved one is interested in learning more please visit: