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.
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Join Us For the New York Family Day Conference
This is for our first-ever New York City FSHD Family Day Conference to meet top researchers, clinicians, fellow patients, and family members. You’ll hear about ongoing clinical trials and connect with the outstanding team at Columbia University Medical Center. Speakers include Michio Hirano, MD, co-director of the CUMC Muscular Dystrophy Association clinic, and director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases; and Matthew Harms, MD, associate professor of neurology, and Fondre Goulbourne, DPT, physical therapist. Please visit the event page for more details!
To contact us directly, please email: NYCChapter@fshdsociety.org.
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Upcoming Events
Jan
20
Webinar on the Voice of the Patient Forum
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will…
Find out more »Apr
21
Voice of the Patient Forum for Drug Development
This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…
Find out more »Jun
27
2020 FSHD Connect
The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.
Find out more »
JENNIFER JO BROUT
Chapter Director
Jennifer Jo Brout is a New York State Certified School Psychologist, a Connecticut Professional Licensed Counselor, and holds a Doctorate in School/Clinical-Child Psychology. Disappointed by her own experiences with the state of the field when seeking help for her own child in 1999, Dr. Brout began efforts to establish better research practice, improved diagnosis, and innovative clinical practice for mental health and medical disorders. Jennifer has dedicated her life to advancing research and advocating for others. She established the International Misophonia Research Network, the Misophonia and Emotion Regulation Program at Duke University. She has FSHD, and is passionate about connecting with others who want to facilitate accelerating research toward disease modification and a cure!
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