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Bringing people together as a Muscle Group chair

Steve, who lives with Becker muscular dystrophy, has been our Southwest Muscle Group Chair for several years. As a lifelong supporter of our charity, he discusses  what it’s like chairing one of our Muscle Groups, his love of volunteering and his campaigning journey.

A man wearing headphones sits infront of a radio microphone and a computer

I’ve been involved in volunteering and campaigning for most of my life. My brother and I were diagnosed with Becker muscular dystrophy as young children, and Muscular Dystrophy UK has always been there for us, so as I got older, I wanted to return the favour.

Becoming a muscle group chair

I became the Southwest Muscle Group Chair a couple of years ago.

“One of the main reasons I took on the role was to learn more about muscle wasting and weakening conditions.”

Obviously, I know a lot about my own, but I wanted to know more about the rarer forms and how they affect individuals. I’ve also learned about things I didn’t expect to, like setting up online Zoom meetings and technology that can help disabled people in everyday life.

As chair of the group, I see the importance of people knowing they have somewhere to go with their thoughts and concerns. We’ve recently had conversations about how to make having heart scans easier, and the best types of beds for people who struggle with repositioning.

“I’ve had individuals message me after the meetings to chat one-to-one about an issue they’re having. It’s really nice to know people trust me to support them.”

I work with the team at Muscular Dystrophy UK to organise guest speakers in the muscle group so that each one is different and informative. We generally meet online around four times a year and had 45 people attend the most recent chat which was amazing. Next month we’re meeting in person; it will be so lovely to catch up face to face. 

Volunteering creates a sense of achievement

I’d encourage everyone to volunteer in some capacity. Even if you only have a little free time to offer it’s so appreciated by the charity. You’ll really be making a difference and feel a big sense of achievement. Without volunteers, there’s a lot of things we wouldn’t be able to achieve.

Supporting the disabled community

I’m quite an independent person and love to fill my days supporting the disabled community. As well as being one of Muscular Dystrophy UK’s Muscle Group Chairs, I also chair north Somerset council’s disabled access group. I’m on various boards with the Southwest neuromuscular team at Southmead Hospital and advise on Great Western Railways’ accessibility panel.

My longest standing commitment is with Sunshine Hospital radio. I’m in my 25th year of supporting them and have had a number of roles there over the years.  I’m currently the programme controller. I probably wouldn’t have the communications skills I do or be volunteering in so many other areas without the confidence I’ve gained from Sunshine Hospital radio.

Changing things for our community

The main reason I became a volunteer was to help change things for our community. I saw how much support Muscular Dystrophy UK offered and campaigned for, and I wanted to be part of that.

I also wanted to make others feel less alone. A lot of people don’t understand that many forms of muscle weakening conditions are progressive. I’ve spent most of my life explaining to doctors, work, and friends how my condition affects me, which can be exhausting and frustrating. Being a muscle group chair means I can bring people together so they don’t feel as alone.

Find out how to become a muscle group chair here.

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