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.
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Walk & Roll
Our first Walk & Roll to Cure FSHD will take place on Sunday, October 27th, 2019 in Torrance, CA at the Wilson Park on Crenshaw Boulevard. JOIN US!
You can register to participate or support the event by visiting our event page HERE
If you’d like, please feel free to bring a picnic lunch for after the walk!
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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.
Upcoming Events
Dec
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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FSHD Radio – December show
Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST - topic TBD
Find out more »
LAURIE HEYMAN
Chapter Director
As a late onset (late 40’s) and the first in my family with FSH Muscular Dystrophy, it was a bit of a shock to learn that this progressive deterioration was something I could not out run, out cycle, or out swim; nor would it allow me to return to my previously athletic self. Finding the FSHD Society led me to discover a global community of people working to find cures and therapies for all of us FSHers. I became involved with the Society, and a door large enough to drive an airplane through has opened to new friends and most importantly, a new purpose. Meeting people who have similar yet different stories and experiences, and working towards a future with hope has given me hope that that future is real.
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!