Welcome to the New York/New Jersey-area Chapter!
Thank you for visiting the New York/New Jersey-area Chapter of the FSHD Society which serves all the areas in-and-around New York, including New Jersey. 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.
To contact us directly, please email: NYCChapter@fshdsociety.org.
Don’t forget to follow us on FACEBOOK
Please join us! Simply fill out the form in the sidebar to become a member of the NYC chapter
Join us for TWO Walk & Rolls in 2024
Long Island, NY
2024 Long Island Walk & Roll to Cure FSHD
Saturday, September 28, 2024
Eisenhower Park, 1899 Park Blvd., East Meadow NY 11554
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.
New Jersey Shore
2024 New Jersey Shore Walk & Roll to Cure FSHD
Sunday, September 29, 2024
At the end of the Seaside Boardwalk (Ocean Terrace & Hiering Avenue), Seaside Heights, NJ
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.
The The 2023 New Jersey Shore Walk & Roll to Cure FSHD was a smashing success! Thank you to everyone who joined us and/or supported us.
Stay tuned as we plan for our 2024 New Jersey Shore Walk & Roll to Cure FSHD
Learn more about the Walk & Roll to Cure FSHD HERE!
Upcoming Events
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DAVID RUBIN
Chapter Director
I am David Rubin. I am excited to re-ignite and lead the NY Chapter of FSHD Society.
I was diagnosed with FSHD 16 years ago at the age of 49 and have experienced slow but consistent muscle loss.
I am recently retired after spending 40 years in business advisory leadership roles. Today I spend my time as a board member of FSHD Society, pursing a variety of entrepreneurial opportunities and being a grandfather.
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.
