Volunteer

Volunteers move our mission forward – help us drive progress for FSHD! 

When we come together as a community and lend our time and talents, we make an impact far beyond what we could ever do alone. 

Every single one of us can contribute. Whether you are interested in a one-time event opportunity or you’d like to be a part of our volunteer leadership team, the FSHD Society has a role for you!  

Learn more, and explore our volunteer opportunities.

Find Your Fit: Volunteer Today

From Following Along to Leading the Way: Sam’s Volunteer Journey

Samantha Johnston (23, Ontario, Canada) has been volunteering for the FSHD Society from a very young age. Read her full profile in the April 2026 edition of the FSHD Advocate.

What is your first memory of volunteering with the FSHD Society?

I’ve been volunteering for the FSHD Society since I was old enough to walk. I remember helping my mom at FSH Society events in New York (because it wasn’t the FSHD Society back then) when the largest fundraising event was a backyard picnic. I would pretty much just follow her around for the promise of ice cream after, but I remember having a blast hanging out with my mom and setting up all the fun decorations! Being a part of the FSHD Society has been my life for as long as I can remember.

Current volunteer role

My newest role as a volunteer has taken a pivot from event planning and is focusing more on the research side. I recently graduated from the University of Toronto with a degree in human biology. When I graduated, I was a bit lost on what I wanted to do with this degree and what sorts of jobs I could apply for. I connected with Amanda Hill at the FSHD Society, and she was looking for a volunteer to help go through all the data they were getting from their brand new platform, BetterLife. It seemed like the perfect way for a new grad to get some professional experience in my field and with a cause I was truly passionate about.

Right now, we are doing a project on women with FSHD and analyzing how disease progression affects women differently from men. This is not a wellresearched topic, and we are hoping our findings inspire more women-focused FSHD studies.

 

My personal inspiration

My biggest exposure to FSHD has been my dad. I grew up being the kid with the dad who couldn’t walk. People at school would ask me why my dad’s legs bent weird and why my mom was the one always volunteering for sporting events or field days. But I’m not here to talk about why it made my life different because quite frankly, it didn’t. I still grew up with the greatest dad in the world. He never missed a volleyball game or honor roll assembly, and quickly became known amongst my friends as the funniest dad, who was ready with a shotgun whenever my sister or I brought a boy home.

I think a lot about how FSHD impacts my dad’s life, and not just in the obvious ways. Whenever we go on family trips, my dad has to sit out on most of the things we do. When it came time to learn to ride my bike, our neighbor had to teach me while my dad watched. And when the day comes, my dad may not be able to walk me down the aisle – one of the most important days in a father’s life.

My dad is my hero, because despite these extremely hard pills to swallow, I don’t think I’ve met another human being on this planet with his attitude.

If you ever come to him with a problem, he could easily spit back at you, At least you don’t have it as bad as me, but he never will. Instead, he’ll be there with a cold beer and some sort of delicious meal, waiting to hear all about it. I think that’s why every time I meet one of my dad’s buddies, they tell me that Jeff Johnston is their best friend in the entire world. And my sister and I are the only ones lucky enough to get to call him our dad. My dad is a very special person, which is why seeing this disease take a little more of his life away every day is incredibly hard to watch.