Welcome to the Bay Area Chapter!
Thank you for visiting the Bay Area Chapter of the FSHD Society! 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: BayAreaChapter@fshdsociety.org
Don’t forget to follow us on FACEBOOK
Please join us! Become a member of our Chapter in the sidebar.
2024 Bay Area Walk & Roll to Cure FSHD
Sunday, September 15, 2024
Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media and via email, and invite others to join you in getting us closer to a cure!
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support.
Bay Area Chapter Meeting: Connect Watch Party
Saturday, June 15, 2024
Join the Bay Area Chapter for a special summer chapter meeting this year in Hollister, CA. Our Bay Area Chapter Directors, Kent and Sue Drescher, will be hosting a morning watch party of the FSHD Society Patient Connect Conference that will be taking place that same morning in Colorado. This will be a wonderful opportunity for those who were unable to make it in-person this year to watch the event as a group, have the chance to network with other chapter members, and enjoy some yummy treats and refreshments.
The exact time and location of the event will be shared once Connect details are released, but please note we are planning on this taking place in the morning hours to coincide with the Connect Conference.
Please use the below button to RSVP.
Join us for the 2023 Walk & Roll to Cure FSHD
Our 2023 annual Bay Area Walk & Roll to Cure FSHD was an amazing success this year! Thank you to everyone who participated and helped raise awareness and funds towards reaching our goal of a cure by 2025. Fundraising will continue through the end of the year.
Learn more about the 2023 Walk & Roll to Cure FSHD HERE!
Stay tuned as we begin planning for our 2024 Walk & Roll to Cure FSHD. If you would like to volunteer to support the 2024 Walk & Roll, please contact your local chapter director or walk leader.
Sharegiver Hour
To all who are caregivers to FSHD loved ones! Mark your calendars, our Sharegivers Hour is held on the 4th Tuesday of every month from 8-9pm EST. You will find this to be a safe place to share and listen to each other about our day to day situations. We invite you to join us!
Go to the Event Calendar to sign up.
Volunteer Spotlight: Sue & Kent Drescher
Meet your local Chapter Directors, Sue & Kent Drescher! Hear them talk about their journey with FSHD, their advice to others, and their hopes for the future.
Upcoming Events
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KENT & SUE DRESCHER
Chapter Directors
Kent: I was diagnosed with FSH in 1982, and by that time, I’d already had some of the symptoms for about 10 years. Sue & I attended our first meeting of the Society years ago, and for me, that was the very first time I ever met somebody else with FSH, and it was amazing.
Sue: It’s been really great to meet each other and our families, and talk about support. What we’re hoping for is a building of that community.
We are both recently retired. Kent spent 27 years as a clinical psychologist at the VA hospital, and continues to be involved in some related research and writing. Sue retired from a tech company, and has been enjoying having extra time to spend with family. Sue also recently taught a class in healthy cooking for cancer survivors at a Kaiser in Santa Clara.
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
Your personal information will be kept strictly confidential.
