2025 FSHD North East & Cumbria Annual Engagement Day

Welcome to the FSHD North East & Cumbria Annual Engagement Day!

We’re so pleased to be back and building on the momentum from last year’s event, thank you for helping make this a growing tradition! This special day is for individuals living with Facioscapulohumeral Muscular Dystrophy (FSHD), along with their families and carers.

It’s a chance to come together with others who truly understand the challenges of living with FSHD, share experiences, and enjoy a warm and supportive space. You’ll hear from experts at the John Walton Muscular Dystrophy Research Centre as we explore key clinical aspects of life with FSHD, covering areas like pain management, sleep, physical activity, and emotional wellbeing. You’ll also learn more about our current research and the work underway to support individuals and families affected by FSHD.

As part of our ongoing efforts to improve understanding of how FSHD progresses over time, we’ll once again be offering the opportunity to take part in some of our latest functional assessments. These are designed to help us explore new ways of monitoring FSHD and could play an important role in shaping future approaches to care. If you're interested in getting involved, simply let us know when you register. We’ll then provide all the information you need and you’ll have the chance to ask questions before deciding whether to take part.

This isn’t just a day of talks, it’s a space for connection, collaboration, and community. You’ll meet others who really “get it,” hear different perspectives, and be part of something that’s growing stronger each year.

Arrivals from 10:00 AM, and the programme begins at 10:30 AM.

We can’t wait to welcome you!