This session, led by Nicole Voet, rehabilitation physician and senior researcher, provides practical, tailored advice for reducing fatigue in daily life for people with FSHD. Drawing on research and clinical experience, it explores causes of fatigue, strategies to distinguish acute from chronic fatigue, and the link with pain and physical activity. Participants will learn to optimise their energy-use through daily structure, rest breaks, assistive devices, and lifestyle adjustments. The focus is on achievable, personalised solutions that improve quality of life, helping people become ‘top athletes of daily life’ while avoiding overexertion.

About Dr Nicole Voet
Nicole Voet, PhD, is a rehabilitation physician and senior researcher at Klimmendaal Rehabilitation Centre and Radboud University Medical Centre’s Muscle Centre in the Netherlands. Her thesis showed that exercise can slow FSHD progression. As a translational researcher, she focuses on improving social participation in neuromuscular disorders, especially FSHD, and studies muscle fatigue and pain. She founded INSPIRE, an international consortium on psychological interventions in neuromuscular disease (NMD), and chairs the Dutch national neuromuscular care network. Widely recognised as an expert in FSHD, fatigue, mental well-being, and physical training, she aims to produce meaningful, directly applicable research results.

The work of FSHD Europe

•   FSHD Europe and the European Trial Network
•   Project Mercury
•   Patient Advisory Council

About Sheila Hawkins
Sheila has worked in charities and the NHS in the UK, mostly in workforce development and transformation. After retiring in 2021 she studied for a Foundation Degree in Fashion and Footwear Design, and is particularly interested in clothes that can be worn in a wheelchair. She was diagnosed with FSHD in 1989 and has been a member of Muscular Dystrophy UK for over 20 years, involved in FSHD Europe since 2018 and President since 2022.

About David Kennedy
David is a member of MDI’s Advocacy Committee and is based in Dublin. Living with FSHD, he brings lived personal experience to advocacy efforts. David is passionate about raising awareness, fostering inclusion, and empowering others through shared stories and community engagement. “My FSHD diagnosis has given me a renewed sense of purpose—to advocate, connect, and inspire others facing similar challenges.”

About Eoghan Curry
Eoghan is 43 years old and, at 29, was the first person to be diagnosed with FSHD Type 2 in Ireland. He says, “Encourage us. Please don’t wrap us in cotton wool. We are adaptive, creative and resourceful problem solvers. The challenges we face give us the superpowers of empathy and social awareness of others in similar situations”.