FSHD Northeast & Cumbria Engagement Day

To celebrate World FSHD Day, Professor Giorgio Tasca and the John Walton Muscular Dystrophy Research Centre (JWMDRC) are delighted to announce the third annual FSHD Engagement Day, taking place in Newcastle upon Tyne on 15 August 2026.

This event is open to individuals living with Facioscapulohumeral Muscular Dystrophy (FSHD), as well as their families and carers from across the North East, Cumbria, and beyond. It provides a welcoming and supportive opportunity to connect with others in the FSHD community, share experiences, and hear directly from clinicians, researchers, and experts working to improve care and understanding of the condition.

The programme will include updates on the latest scientific developments in FSHD research, alongside discussions on topics that matter most to people living with the condition. Attendees will hear about current and emerging clinical trials, the UK FSHD Registry, innovative digital tools such as Myo-Guide, and the role of MRI in advancing our understanding of disease progression.

The day will also feature a dedicated session exploring the psychological aspects of living with neuromuscular conditions, with a particular focus on FSHD. Throughout the event, there will be opportunities for discussion, questions, and informal interaction, allowing participants to raise issues that are important to them and engage directly with members of the clinical and research teams.

A patient led session centred on lived experience will provide plenty of opportunity for open conversation, shared learning, and peer support.

Breaks and lunch will offer further chances to connect with others in a relaxed and friendly environment.

Arrival and refreshments from 9:45 AM, with the programme beginning at 10:30 AM.

We look forward to welcoming you to Newcastle for collaborative day dedicated to the FSHD community.