Connecticut Chapter

Thank you for visiting the Connecticut Chapter of the FSHD Society which officially launched in September 2018. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.

Please Join Us For the 3rd Annual Charity Bartending Event!

Thursday, August 15th from 7 PM – 9 PM at McGreevy’s Sports Bar

All tips will be donated to the FSHD Society and 10% of sales will be donated as well. Donations count from 7PM – 9PM, but we stay after! 

See Event Details HERE.

Virtual Meeting with Guest Speaker Dr. David Younger

On Monday, November 4th, we are excited to have Dr. David Younger as our special guest with us for our member meeting. The meeting will be from 7 PM – 8:30 PM. For more event details, click HERE.

To join from your computer:
Or Telephone: +1 646 558 8656, Meeting ID: 442 453 571

RSVP to Kathy at

Monthly Virtual Zoom Meeting 

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: 442 453 571

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 FSHD Society Events calendar to search for upcoming events in your area!

To reach us, please email:

Don’t forget to follow us on FACEBOOK!

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