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The San Diego 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.
Amy Bekier’s journey with FSHD has inspired her to advocate for others facing similar challenges. After FSHD began affecting her and her family, she adopted the motto, “I can no longer sit and cope but must get active and hope.” When Amy moved to San Diego, she became both a national Board member and the San Diego Chapter Director of the FSHD Society, where she helps support others living with the condition.
Before focusing on FSHD advocacy, Amy had a successful career as an insurance agent and Chartered Life Underwriter. She is also an award-winning artist who works with soft pastels and oil. When she could no longer use her right arm, Amy taught herself to paint with her left hand. In addition to her artistic pursuits, Amy enjoys modified recreational golf and is a proud member of the Bernardo Heights Country Club.
Contact Amy directly or visit the San Diego Facebook page.
While Amy 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.
