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.
____________________
2024 New England Walk & Roll to Cure FSHD
Sunday, September 22, 2024
Check-in at 10:00am, Walk starts at 10:30am
Larz Anderson Park, 25 Newton St, Brookline, MA 02445
Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media and via email, and invite others to join you in getting us closer to a cure!
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support.
Save the Date for the 2023 Walk & Roll to Cure FSHD!
Our 2023 annual New England Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
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
Upcoming Events
New England FSHD 360
University of Massachusetts Medical Center Plantation Street, Worcester, Massachusetts, United StatesCo-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this... 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.
