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
Nov
16
New York City Family Day Conference
New York Athletic Club Presidents Room 180 Central Park South New York, NY 10019 Advance registration required. Please click the button below. Deadline November 11, 2019. REGISTER Download the Meeting Flyer Download the 2019 NYC FSHD Family Day Agenda Join us 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,…
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FSHD Radio welcomes Levi Benson and Jenny Hasenjaeger
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician's performances have been…
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7
Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…
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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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