Welcome to the Connecticut Chapter!
Thank you for visiting the Connecticut Chapter of the FSHD Society! 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.
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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. We take a summer hiatus June - August, but we can set up an additional meeting as needed!
To join from your computer: https://zoom.us/j/442453571
Or Telephone: +1 646 558 8656, Meeting ID: 442 453 571
RSVP to Kathy at CTChapter@FSHDSociety.org
See Below for Additional Events
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Connecticut Walk & Roll to Cure FSHD - Fall 2021!
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Don’t forget to follow us on FACEBOOK
Would you like to get involved? Simply fill out the form in the sidebar.
Upcoming Events
Jan
21
FSHD University: Introduction to whole-body MRI for FSH muscular dystrophy
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We refer often to MRI (magnetic resonance imaging) as an almost magical way to peer inside the body and see what's going on with our muscles. MRI is a key component of Fulcrum's ReDUX4 clinical trial for FSH muscular dystrophy. But do you really understand how this technology works, and what it can and can't reveal? Is it useful only for research, or does it…
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Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Feb
8
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. Our January meeting was fantastic! Attendance is…
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KATHY SENECAL
Chapter Director
My name is Kathy Senecal, and with the help of Sarah Pashe, we have formed FSHD Connecticut Connections. We began monthly meetings, first on site at a specific location, and then found using Zoom online was convenient and reached more people. The encouragement, support, exchange of ideas, and experiences we share as a group empowers us, as well as the FSHD Society, as it moves forward towards our common goal of treatment and cure.
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
