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
Mar
4
FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »Apr
1
FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »
Voice of the Patient Forum for Drug Development
This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…
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.
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