Volunteers are the Heart of the FSHD Society
The FSHD Society began as a volunteer-led organization, and it remains volunteer-led at its core. What started as a small group of dedicated advocates has grown into the world's largest patient advocacy organization focused solely on FSHD. The driving force that has gotten us here are the hundreds of volunteers working together to spread awareness, organize at the local level, participate in research, and raise funds in our combined effort to fight FSHD.
Volunteers are the cornerstone of our success. By generously sharing their time and talent, they expand our expertise and strengthen our ability to fulfill our critical mission. Each year, their contributions amount to hundreds of hours – representing thousands of dollars in donated service – that make an immeasurable difference in the lives we touch.
We know that we wouldn’t be where we are today without our vital network of volunteers, and we know that we have a long path ahead of us to ensure that all patients and families living with FSHD have the support and access to resources that they need. We have plenty of work to do together, and we’re glad you’re here.
Everyone can get involved, and everyone has a skill they can share. Whether you have very little time to give or you’ve cleared your whole calendar, we have an opportunity to fit your unique needs and skills!
Let’s power the path forward, together.
Fill out our form to share your interest and let’s get started!