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The Bay Area chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through.
We provide support, share local resources, and keep you informed on the latest research and care. Whether you’re newly diagnosed or have been living with FSHD for years, we’re here to support you, every step of the way.
Join your local chapter and learn how we can support you on your FSHD journey.
Kent was diagnosed with FSHD in 1982, but he had been dealing with symptoms for almost 10 years before that. The first time he went to an FSHD Society meeting, he met others with the same condition and felt a strong connection. It was a great experience for him to meet people who truly understood what he was going through.
After retiring, Kent and Sue now have more time to focus on their passions. Kent, a former clinical psychologist, still works on research and writing, while Sue, who retired from a tech company, enjoys spending more time with family. Together, they are excited to help the Bay Area FSHD community grow and support those affected by the condition.
Contact Kent & Sue directly or visit the Bay Area Facebook page.
While Kent & Sue are powering the path forward, we’re always looking for passionate individuals to help with planning events, spreading the word, and working on other projects. Your involvement will make a big difference in growing the chapter and supporting those affected by FSHD.
Contact Beth Johnston, Chief of Volunteer Leadership to learn how you can make an impact and get involved.
Bay Area Chapter Meeting Sunday, May 4, 2025 from 1:00pm-4:00pm PT Stanford University, Hoover Pavilion. 211 Quarry Road. Palo Alto, CA 94304, in Hoover 208 At this meeting, we will […]
