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The Western Pennsylvania 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.
Mark and his wife, Renee, have been navigating the challenges of FSHD together for more than 30 years. From the beginning, when Renee’s parents objected to Mark’s proposal because they feared his disease, to raising three children while juggling careers, their deep commitment to one another has kept them strong through every challenge. Their bond has been the foundation of their journey with FSHD.
Diagnosed with FSHD as a teenager and using a power wheelchair for 20 years, Mark is committed to supporting others affected by the disease. A retired attorney from Pittsburgh, he vividly remembers the first time he met another person with FSHD at an FSHD Society meeting in 2014. That moment gave him hope and inspired him to start the Western Pennsylvania Chapter. Mark is dedicated to fostering a strong community and providing resources that help support individuals and families affected by FSHD.
Contact Mark directly or visit the Western Pennsylvania Facebook page.
While Mark 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.
We’re excited to pilot a new regional meeting format designed to bring more of our FSHD community together. This meeting is for the East Coast and will cover general updates and include regional breakout sessions.
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.
