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 & The New Jersey Shore
Our 2024 annual Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated in helping raise awareness and funds toward reaching our goal of finding treatments and a cure for FSH Muscular Dystrophy. Fundraising will continue through the end of the year.
Learn more about the Walk & Roll to Cure FSHD here.
Stay tuned as we begin planning for our 2025 Walk & Roll to Cure FSHD!
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.
