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New England Chapter

Home / Connect / Local Chapters / New England Chapter

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.

New England Walk & Roll

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
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Upcoming Events

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Today

June 2023

Wed 7
Featured Featured Jun 7 @ 5:00 pm - 6:00 pm Event Series Women on Wellness

Women on Wellness – Instrumental activities of daily living

Zoom Virtual Meeting

First 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 »

Thu 8
Featured Featured Jun 8 @ 12:00 pm - 1:00 pm Event Series Feeling Fit with FSHD

Feeling Fit with FSHD – Bill Herzberg

Zoom Virtual Meeting

18:00 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 »

Mon 12
Wellness Hour
Featured Featured Jun 12 @ 5:00 pm - 6:00 pm

Wellness Hour Movie Night – Crip Camp

Zoom Virtual Meeting

5:00 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 »

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Kristen Zwickau

Kristin Zwickau

Chapter Director: Education

Kathy Senecal

Kathy Senecal

Chapter Director: Peer Support

Diane-Lexi

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.

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General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

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