Tony became the East Midlands Muscle Group Chair in 2023. He shares his story about why he wanted to be a volunteer, what’s involved, and what he’s gained from the experience.
Being a Muscle Group chair has allowed me to form new friendships

After living abroad for more than 30 years, I returned to the UK in 2022 due to my condition worsening. I’m 67 now and was diagnosed with myofibrillar myositis and anti-SRP immune mediated necrotizing myositis 12 years ago. I’d always been a very active person and used to enjoy many outdoor hobbies such as cycling 100-mile events for charity and hiking in the Oregon countryside. I’ve had to adapt to a slower paced life in the last decade and have only been able to maintain my long-term hobby of photography. I’m hoping to receive an electric wheelchair soon so I can go hiking again with my wife.
Becoming a Muscle Group chair has given me a new focus and social circle
I started chairing the East Midlands Muscle Group at the beginning of 2023. I felt like it would be a great way for me to learn from others about the support that’s available in the UK for our community.
“I also wanted to help those who had been recently diagnosed, as I know this can be difficult to cope with.”
Before moving back to the UK, I played an active role in the USA Myositis Understanding and Support charity, so I knew groups like this are a great way to find a social circle who understand what you’re going through.
Most people join a Muscle Group as much for the social connection to others in the community and their carers, as they do to gain insight from the talks. For the next East Midlands Muscle Group, I’ve been organising talks from Disabled Living UK and Motability. We always leave at least half an hour for general socialising too.
You learn valuable skills as a Muscle Group chair
Becoming a Muscle Group chair has been a great new challenge for me. I’ve learnt how to approach and find speakers, as well as how to keep conversations flowing and facilitate people to support one another.
“I’ve learnt a great deal from those who attend the Muscle Group; for every problem somebody has, someone else usually has a helpful solution, or even just being able to empathise with that person to help them feel less alone makes all the difference.”
Being a Muscle Group chair involves generating content for the meetings, finding suitable venues and arranging food. You also host the day and make sure all attendees feel comfortable taking part in the discussions. Ensuring everyone gets time to talk is key during the meetings.
There’s a small amount of online training involved which is insightful and helpful to develop your skills. After that, Calley, Muscular Dystrophy UK’s Volunteer Engagement Manager, is always great at answering any questions you may have.
If you’re considering becoming a Muscle Group chair or doing some kind of volunteering, I’d say go for it! It’s a great way to give back and you learn a lot about yourself along the way. I’ve met some great friends through the group who all get together regularly outside of the organised events.

Local Muscle Groups are our network of support groups across the UK. They’re a great opportunity to share experiences and meet other people affected by muscle wasting and weakening conditions in your area.

Our chairs are friendly community leaders who lead the support group and help to shape the agenda.