Browsing “Living with FSHD - FSHD Society - Page 3”

2025 Volunteer Leadership Summit

Powered by love and resilience by Beth Johnston, FSHD Society “It’s not just about giving back—it’s about growing, having fun, and being part of something truly impactful.​” – anonymous “Seeing […]

You’re invited! Mobility impact study

Nils Hakansson (he also goes by Alex) and is a professor in the College of Engineering at Wichita State University. He has FSHD and is working on projects to help […]

Disability, Wildfire & Disaster Resources 

A passion for adventure and advocacy

Don Burke recently completed a remarkable 93-day road trip, covering 28,000 miles across 36 states and four Canadian provinces in his electric vehicle. This journey is part of why he […]

Speaking honestly

Originally from the Midwest, Chelsea Moeller now calls Maine home, where she lives with her husband, daughter, and their 125-pound Newfoundland, Del. The close-knit community of her town makes it […]