[Watch] MDI's FSHD Community Gathering: Connection, Knowledge and Community

MDI hosted an online FSHD Community Gathering in October 2025, bringing together people living with facioscapulohumeral muscular dystrophy (FSHD) and their families for a half day of learning, discussion and connection. This event brought together a rich mix of perspectives, combining clinical insight, advocacy, and lived experience within the FSHD community.

 Dr Nicole Voet, a rehabilitation physician and senior researcher from the Netherlands specialising in neuromuscular conditions, led a session on improving quality of life with FSHD. She explored fatigue management, pain, physical activity and how to build personalised, practical strategies for daily living.

 Sheila Hawkins, President of FSHD Europe, shared updates on European-level advocacy and research initiatives including the European Trial Network and Project Mercury. These global initiatives are aimed at accelerating the development of therapies for FSHD.

 MDI members David Kennedy and Eoghan Curry spoke openly about their own experiences of living with FSHD. Their insights grounded the discussion in real-life perspectives, reflecting the knowledge that comes from lived experience and highlighting why community voices are such an essential part of events like this.

 As with previous MDI community gatherings, the day provided space not just for information, but for connection - something our members consistently tell us matters most.