Save the date for our FSHD COMMUNITY GATHERING
Muscular Dystrophy Ireland is delighted to continue its series of condition-specific community gatherings by hosting our FSHD COMMUNITY GATHERING.
📅 11:00 – 16:00, Saturday, 11 October 2025.
📍 In-person at Muscular Dystrophy Ireland, 75 Lucan Road, Chapelizod, D20 DR77 and on Zoom.
An opportunity for people living with FSHD and their families to connect as a community and learn together.
Time for questions and discussion.
· Light lunch provided.
We are excited to welcome the following speakers:
Improving Quality of Life in FSHD: exercise, fatigue and pain management through personalised, patient-centred rehabilitation, with Dr Nicole Voet
Dr Voet is a rehabilitation physician and senior researcher based in the Netherlands, specialising in neuromuscular conditions, with a particular focus on FSHD. Drawing on research and clinical experience, this session will explore 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.
FSHD Europe: the European voice for people with FSHD, with Sheila Hawkins
Sheila Hawkins is President of FSHD Europe and has been a member of Muscular Dystrophy UK for over 20 years. She was diagnosed with FSHD in 1989. Sheila will share updates on the work of FSHD Europe including: the European Trial Network; Project Mercury, the global initiative to speed the delivery of therapies for FSHD; and FSHD Europe’s Patient Advisory Council.
MDI members and advocates David Kennedy and Eoghan Curry will share their experiences of living with FSHD.
More details to follow! We hope you can join us!
People said about MDI’s previous community gatherings:
“After this event I feel incredibly supported, optimistic and motivated! Thank you!”
“Good speakers, chance to chat to everyone and relaxed welcoming atmosphere”
“It was great to feel part of a group of like-minded people that would understand the condition and be interested in chatting about the hows and whys of things related to it.”