New England Chapter

Welcome to FSH Society’s Inaugural Chapter: New England! 

The New England Chapter was officially launched on June 20th, 2018. Our goal as a Chapter is to engage and empower our community all across the region to support each other and to fight to find a cure.

To reach us directly, please email:

CALL TO ACTION: The University of Rochester needs additional patient participants for their research! See below for a full explanation from Leann Lewis, Health Project Coordinator at the Neurology-Neuromuscular Disease Center: 

“In regards to the studies we have going on, we really need more FSHD subjects to participate, especially people who have not participated before and/or are newly diagnosed. This is not a requirement to participate, but we are trying to reach new subjects. As you know, FSHD is a rare disease, so we tend to reach the same group of people every time we recruit. And these people have been wonderful in participating multiple times over many years. Their participation is still very valuable, but we’d love to reach out to new participants as well so they can help join the effort.

At the University of Rochester Medical Center, we have multiple FSHD studies going on all the time. We work with many other sites around the country and the world, so if potential subjects contact us, we can always refer them to a site that is closer or more convenient.

We have studies that are one-day only, or require multiple visits. Some of these studies involve invasive procedures like muscle biopsy, some involve study drugs, and others do not involve any invasive procedures. When potential subjects contact me, I can talk to them about the different studies we have going on and help them determine which study that person is best suited for based on eligibility, time commitment, preference, etc. 

Another terrific resource is the FSHD Registry we have at the URMC. People can go to and sign up to join the Registry. Subjects will complete annual surveys to update their information regarding their condition and contact information so that their eligibility for studies can be prescreened. Then the Registry will send the subject information on the studies they are eligible for. The subject can then decide if they would like to contact the researchers of those studies to participate. Subject information is never released to other researchers.

Subjects can contact me at [my email address] or 585-275-7680.”

Leann Lewis, MS
Health Project Coordinator
Neurology-Neuromuscular Disease Center
University of Rochester
601 Elmwood Avenue
Rochester, NY 14642
Phone: 585-275-7680