Connecticut Chapter

Hello, and welcome to the Connecticut Chapter page!

This chapter was founded in September 2018 by Kathy Senecal and we are excited to be planning for 2019!

We have been doing virtual support group meetings for quite a while now, and we would love for you to join us! All are welcome – please call in from anywhere. Patients, family members, and caregivers are encouraged to participate! We meet the first Thursday of the month via Zoom web conference, 7:00pm – 8:30pm EST.  

To join from your computer:
Or Telephone: +1 646 558 8656, Meeting ID: 788 246 660

RSVP to Kathy at or Sarah at

Walk & Roll

Our first Walk & Roll to Cure FSHD will take place on Sunday, Oct. 6th, 2019 in Hammonasset Beach State Park, Madison, CT. JOIN US! You can register to participate or support the event by making a donation HERE!

Visit the FSH Society Events calendar to search for upcoming events in your area!

To reach us, please email:

Would you like to get involved? Simply fill out the form below: