Welcome to the New York City Chapter!
Thank you for visiting the New York City Chapter of the FSHD Society which officially launched in May 2019. 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.
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Please join us! Simply fill out the form in the sidebar to become a member of the NYC chapter
Upcoming Events
Jan
21
FSHD University: Introduction to whole-body MRI for FSH muscular dystrophy
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We refer often to MRI (magnetic resonance imaging) as an almost magical way to peer inside the body and see what's going on with our muscles. MRI is a key component of Fulcrum's ReDUX4 clinical trial for FSH muscular dystrophy. But do you really understand how this technology works, and what it can and can't reveal? Is it useful only for research, or does it…
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Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Feb
8
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. Our January meeting was fantastic! Attendance is…
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JOIN US!
Visit us online to join our FSHD community, and connect with local members.
Contact the NYC Chapter:
NYC Chapter@fshdsociety.org
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
