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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Los Angeles Walk & Roll to Cure FSHD - Fall 2021!
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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. We are looking for a new chapter leader or leadership committee. Please consider joining us!
Upcoming Events
Feb
28
Rare Disease Day
The FSHD Society participates in the annual Rare Disease Day by encouraging our community to share their stories over social media. You can use words, photos, memes, or video to tell your FSHD story. Use whatever medium you're most comfortable with. The point is to share it over social media, tag your friends, ask them to share or re-post it to spread the word as widely as possible. Visit our Rare Disease Day toolkit for ideas, images to use, and…
Find out more »Mar
8
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. At last month's meeting, we had a…
Find out more »FSHD Society Radio with Carlos Romero
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this evening is Carlos Romero, who has amazed us over the past several years by becoming a national paraclimbing champion and being featured in People magazine for losing 225 pounds following his FSHD diagnosis in 2012. He recently started his own podcast, Crappy Comics, a "podcast about comedy and courage." We can't wait to catch up with him! Join host Tim Hollenback on…
Find out more »
Your Name Here?
Chapter Director
We are looking for leadership for this important chapter! We welcome all interested parties to contact us and inquire about getting involved as a member of the chapter committee or to be considered for the important role of Chapter Director
Contact Beth Johnston at Beth.Johnston@FSHDSociety.org
Stay Informed on Local Activities
Are you not already a member of the Society? Sign-up via our new member form and get connected!
