FSHD Annual Engagement Day

To celebrate World FSHD Day, Professor Giorgio Tasca and the John Walton Muscular Dystrophy Research Centre (JWMDRC) are delighted to announce the second annual FSHD Engagement Day, taking place in Newcastle upon Tyne on September 25, 2025. 

This event is open to individuals living with Facioscapulohumeral Muscular Dystrophy (FSHD), as well as their families and carers across the North East and Cumbria. It offers a welcoming and supportive space to connect with others in the community, share experiences, and hear directly from experts in the field. 

The day will feature engaging presentations and discussions exploring key clinical aspects of life with FSHD, including pain management, sleep, physical activity, and emotional wellbeing. Attendees will also receive updates on the Centre’s research initiatives and ongoing efforts to support individuals and families affected by FSHD. 

As part of our commitment to deepening understanding of how FSHD progresses, participants can take part in innovative functional assessments taking place throughout the day. These assessments contribute to research on new ways of monitoring the condition. If you're interested, simply indicate this when booking, and more information will be provided to help you decide whether to take part. 

Arrivals from 10:00 AM, with the programme beginning at 10:30 AM. 

To reserve your place, book here: https://rb.gy/gabmw7