Lighting the Way to a Cure

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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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Make plans now to Walk & Roll with us!

Our international Walk & Roll Celebration Livestream will take place on Saturday, September 17, 2022. Here in New England, we are making plans to build on the success of last year's walk and hope you will join us on Saturday, October 1st!

Want to help plan or organize the New England Walk & Roll to Cure FSHD? We'd love to have you! Let us know at alexipappas19@gmail.com

Want to know more about the Walk & Roll? Learn More

To reach us directly, please email: NewEnglandChapter@fshdsociety.org.

Don’t forget to follow us on FACEBOOK!

The New England Chapter is proudly sponsored by Fulcrum Therapeutics

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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 strong, 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.

Sign up today!