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.
The 2023 California Walk & Roll to Cure FSHD
Mark your calendar for Sunday, September 17th, 2023 for our Annual Los Angeles Walk & Roll to Cure FSHD at Kite Field in Van Nuys, CA. Walk & Roll to Cure FSHD is an event that unites the FSHD community to raise awareness of FSHD and move us closer to our goal of disease-modifying treatments to families by 2025. Help us meet our fundraising goal of $50,000 this year and light the way to a cure!
Learn more about the 2023 Walk & Roll to Cure FSHD here!
Upcoming Events
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with... Read More »
FSHD Radio: Hot off the Press – Mel Hayes of Fulcrum Therapeutics on the REACH Trial
Facebook and YouTubeThursday, September 28th 14:00 PM CET | 13:00 PM UK | 8:00 AM ET | 7:00 AM CT | 6:00 AM MT | 5:00 AM PT Earlier this month, Fulcrum... Read More »
Feeling Fit with FSHD – Why exercise?
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for our second session of... Read More »
James Rice
Chapter Director
I'm James Rice and I was born and raised in Southern California in Orange County. I was diagnosed with FSHD via genetic testing when I was 19 as a freshman at Michigan State University. I moved to Los Angeles in 2015 to start a career in Civil Engineering. Outside of my career, I like being outdoors as much as I can, bodyboarding, playing video games, music, and volunteering. I'm grateful to have the opportunity to be the FSHD Society Chapter Director in Los Angeles. I look forward to working with everyone as we work towards a treatment for this condition.
Stay Informed on Chapter Activities
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of your local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
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