Welcome to the 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.
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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.
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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Walk & Roll
Our first Walk & Roll to Cure FSHD took place on Sunday, Oct. 6th, 2019 in Hammonasset Beach State Park, Madison, CT.
You can still support the event by making a donation HERE!
To reach us, please email: CTChapter@fshdsociety.org
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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
Dec
5
FSHD Connecticut Connections
Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! Join from your computer or tablet: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org
Find out more »
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
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FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
Find out more »
KATHY SENECAL
Chapter Director
My name is Kathy Senecal, and with the help of Sarah Pashe, formed FSHD Connecticut Connections last year. We began monthly meetings, first on site at a specific location, and then found using Zoom 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 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!