Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
The Greater Philadelphia 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.
Bill has been a member of the FSHD Society for over a decade and understands how valuable it is to have a local community that shares experiences, offers strategies to manage FSHD, and supports research to improve the lives of those affected. Facing this disease alone can be challenging, but being part of a community that understands makes a world of difference.
Bill’s wife has been a constant source of support throughout his journey with FSHD. Together, they’ve faced many challenges, and her encouragement and belief in the importance of the FSHD Society have been vital to him. With her support, Bill has been able to stay connected to the community and continue his efforts to raise awareness and provide support for others affected by FSHD.
Contact Bill directly or visit the Greater Philadelphia Facebook page.
While Bill 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.
