Welcome to the Sacramento Chapter!
Thank you for visiting the Sacramento Chapter of the FSHD Society which officially launched in September 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.
To contact us directly, please email:
SacramentoChapter@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!
2024 Sacramento Walk & Roll to Cure FSHD
Our 2024 annual Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated in helping raise awareness and funds toward reaching our goal of finding treatments and a cure for FSH Muscular Dystrophy. Fundraising will continue through the end of the year.
Learn more about the Walk & Roll to Cure FSHD here.
Stay tuned as we begin planning for our 2025 Walk & Roll to Cure FSHD!
Upcoming Chapter Meeting: Wed. July 10
Wednesday, July 10, 2024
6:00-7:00pm PT on Zoom
Join the Sacramento Chapter for our upcoming virtual meeting. We will have a guest presenter, Christine Arseneault, who will share ways to stay active outdoors with FSHD. Christine is a resident of the Bay Area and has found a number of ways to stay engaged outdoors and enjoy the many activities Norther California has to offer. We will also take a moment to discuss updates from the 2024 Connect Conference and leave time for open discussion and questions.
Upcoming Chapter Meeting: Sat. May 4th
Saturday, May 4, 2024 from 12:00 pm - 2:00 pm PT
WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825
DETAILS: Join us for yummy food and good conversation at Mimi's Cafe for lunch as we officially welcome our new Sacramento Chapter Director, Paul Miller. This will be a wonderful opportunity to connect with other members of the community, hear exciting updates from the Society about upcoming events, and learn about the current state of FSHD research. Additionally, FSHD Society Chief Community Officer, Beth Johnston, and Regional Director, Ashley Ferreira, will be in attendance to answer any questions from the community.
Lunch and drinks will be provided by the Society. This event is free, but RSVP is requested.
The California Walk & Roll a Tremendous Success!
The Bay Area, San Diego, Los Angeles, and Sacramento chapters came together from across the state for one, amazing day of walking & rolling to Cure FSHD! Walkers and rollers stepped out to say "FSHD Ends with Me!" and our local event raised more than $90,000 towards the campaign total, through participants and teams from across the state.
Upcoming Events
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Paul Miller
Chapter Director
At the age of 16 I was diagnosed with FSHD. I am now 62. Throughout my life I have stayed positive and found many ways to cope with my condition. Currently I use a power wheelchair for outside activities and a wheeled walker around the house. My current passion is photography.
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 strong, 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
Your personal information will be kept strictly confidential.
