Lebers Hereditary Optic Neuropathy PLUS - LHON PLUS

09/07/2026

Attention Everyone,

There is a new survey that we are hoping to get as much participation from as many LHON, LHON PLUS and LHON MS families as possible. If you need any assistance with filling it out please contact Lisa Mito

Note: This survey is intended for individuals who have a genetic diagnosis of LHON or LHON-Plus (including LHON-MS), and asymptomatic carriers with an LHON pathogenic variant.

“LHON and LHON-Plus (including LHON-MS) Patient Experience Survey”

Welcome and Thank You for Your Participation

Thank you for taking the time to complete this survey. We hope that the information collected from this survey will help researchers understand what it is like for individuals to live with LHON-Plus. Leber Hereditary Optic Neuropathy (LHON) is most commonly known for causing vision loss, but many individuals experience additional symptoms (often referred to as "LHON-Plus"). Some noted symptoms are related to nerves, the brain, muscles, and energy levels, and frequently cause pain in multiple areas of the body. The valuable insights you provide by completing this survey will directly help researchers, clinicians, and drug developers understand which symptoms are most limiting to daily life routines. Researchers will use the data from the survey to identify and prioritize the most critical areas for future clinical trials and new drug treatments.

Important Information Before You Begin:

• Eligibility: This survey is intended for individuals who have a genetic diagnosis of LHON or LHON-Plus (including LHON-MS), and asymptomatic carriers with an LHON pathogenic variant.

• Time Commitment: The survey consists of 12 sections and takes approximately 15 to 20 minutes to complete.

• Data Privacy: Taking part in this survey is entirely voluntary. All responses will be kept strictly confidential and anonymous, and the combined data will only be used for research and therapeutic development purposes. You may choose to stop the survey at any point.

https://docs.google.com/forms/d/e/1FAIpQLSfuA2NNsZw1qn3yi4dBa_l2qi44t3QCZpv-d7bKOEShBxke_g/viewform?usp=header

Thank you,

Dr. Anne Chiaramello

Welcome and Thank You for Your Participation Thank you for taking the time to complete this survey. We hope that the information collected from this survey will help researchers understand what it is like for individuals to live with LHON-Plus. Leber Hereditary Optic Neuropathy (LHON) is most common...

07/16/2026

If Smoke conditions don’t improve in next 2 days, we may be cutting our vacation to the Upper Peninsula of Michigan short ☹️.
Extreme hazard air quality from Canadian fires. Unhealthy starts at 150, hazardous at 300. last night hit 955! 600’s yesterday & today . Previously had so much fun swimming in lake, site seeing, & Agate hunting. Indoors yesterday & so far today. Boo! Tough for everybody, but of course us LHON & LHON Plus peeps need to take extreme caution. I got very weak/fatigued last evening. Thinking of all of you that are affected by Wildfire Smoke!