Welcome to the Los Angeles Chapter!
Thank you for visiting the Los Angeles Chapter of the FSHD Society which officially launched in August 2018. 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.
Our 2020 Virtual Walk & Roll was fantastic, thanks to all of you! Our chapter overcame all the obstacles 2020 threw at us. You invited your family and friends and they showed up!
On Saturday, September 12, 2020 we joined with Chapters nationwide to celebrate in a 4-hour Facebook livestream event. It was awesome.
Did you participate? You can still earn some great rewards. The deadline for prizes is September 25th. Have some fun pictures or video to share? Add them to our google folder HERE
If you haven't had a chance to chip in, it's not too late to help us reach our goal.
To contact us directly, please email: LosAngelesChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Would you like to get involved? Simply fill out the form in the sidebar. We are looking for a new chapter leader or leadership committee. Please consider joining us!
Past Events › Los Angeles Chapter Events
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to jut out like an angel's wing. This can cause pain and prevent a person from being able to raise the arm. A solution that works…Find out more »
Please mark your calendars: The 2020 Los Angeles Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Walk & Roll Leader, Graciela Saunders, with any questions! She can be reached at firstname.lastname@example.org We look forward to "seeing" you on September 12th!Find out more »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Kathryn Wagner, MD PhD Kathryn Wagner, MD PhD, has seen patients with FSH muscular dystrophy for more than 20 years. As director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and a Professor of Neurology and Neuroscience at the Johns Hopkins School of Medicine, she has established one of the world's leading centers for FSHD research. Drawing on her deep experience…Find out more »