Welcome to the New England Chapter!
Thank you for visiting the New England 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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Save the Date for the 2023 Walk & Roll to Cure FSHD!
Get ready for another year of fun and fundraising! Walk and Roll with your family, friends, and neighbors anytime during the month of September, then be sure to join us at our Thank You celebration on Saturday, October 7th, where we'll be back at the Optum building in Boston. Get started by registering here! We thank you for your support.
To reach us directly, please email: [email protected].
Don’t forget to follow us on FACEBOOK!
The New England Chapter is proudly sponsored by Fulcrum Therapeutics
Upcoming Events
Women on Wellness – Instrumental activities of daily living
Zoom Virtual MeetingFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is what we call "Instrumental ADL’s... Read More »
Feeling Fit with FSHD – Bill Herzberg
Zoom Virtual Meeting18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Mitch Wade and Bill Herzberg Last month... Read More »
Wellness Hour Movie Night – Crip Camp
Zoom Virtual Meeting5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Change of topic! Instead of Happy Hour, this month we will enjoy another Movie Night... Read More »
Kristin Zwickau
Chapter Director: Education
Kathy Senecal
Chapter Director: Peer Support
Lexi Pappas
Chapter Director: Fundraising
Kristin first got involved with the FSHD Society in October 2017 after her daughter was clinically diagnosed with FSHD 2, the first in their family that they know of. They’d never heard about FSH Muscular Dystrophy before, and have jumped at the chance to do and learn as much as possible. With support and hope, FSHD has a chance of being cured sooner rather than later!
In 2017, Kathy Senecal, with the help of Sarah Pashe, formed the Connecticut Connections meetings, which later evolved in to the CT Chapter, now part of the New England Chapter! 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 Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of the local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
