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The Sacramento 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.
At the age of 16, Paul was diagnosed with FSHD, and he is now 62. Throughout his life, he has maintained a positive outlook and found many ways to adapt to the condition. While he now uses a power wheelchair for outdoor activities and a wheeled walker inside, he remains active and independent.
Paul’s current passion is photography, which allows him to express his creativity and capture the beauty around him. Despite the challenges of FSHD, he finds joy in his hobby and uses it as a way to connect with others and share his unique perspective.
Contact Paul directly or visit the Sacramento Facebook page.
While Paul is 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.
The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
