Claire lives with miyoshi myopathy, a muscle-wasting condition, which caused her to take early retirement aged 31. Since leaving full-time work, Claire has thrown herself into volunteering with Muscular Dystrophy UK (MDUK) as an active campaigner, Peer Support Volunteer, and organiser of the Spirit of Christmas annual fundraising concert in Belfast.
She explains, “It is quite a shock to be told you’ll go from being able-bodied, to one day in the future needing to use a wheelchair, or that you’ll have a life debilitating lifestyle to deal with. I kind of thought, I do want to do more to help others so that they can see that although it’s a shock you can still live as normal a life as possible with the condition.
“It was difficult having to let go of my career so young, but I was determined to keep busy and not sit in the house all day. Getting involved with volunteering was a great way to use my experience and skills to help other people and just listen.
“By volunteering with MDUK’s Muscle Groups and becoming a peer support volunteer, I was able to support people who are newly diagnosed or coming to terms with their condition. Having experienced the shock of being diagnosed with a rare condition when I was 16 and feeling very alone, I knew what a difference it can make having somebody there for you who has been through it.”
“Volunteering helped me to better cope with my own condition”
Claire has supported other people living with muscle-wasting conditions and built a community of volunteers. She says “I found this connection as a volunteer made me feel less alone and helped me find better ways to cope with my own condition.”
Claire has also used her own understanding of the need for multi-disciplinary care provision to campaign for better-funded neuromuscular services and support.
“I worked with the All Party Parliamentary Group for Northern Ireland, where we meet with politicians and NHS leaders to ensure the needs of people living with muscle-wasting conditions are highlighted in the Northern Ireland Assembly” explains Claire.
Favourite volunteering memories
Claire has been involved with organising the Spirit of Christmas concert since 2019, which she describes as some of her “proudest moments as a volunteer.”
She says, “through networking, I booked some great musicians and managed to secure Stormont, the Parliament Buildings, as the venue.
“If you’re considering volunteering for MDUK, I would say ‘go for it!’ It’s really enjoyable and rewarding and you can make a real difference to someone’s life.”
“I never dreamed I’d receive an award”
Claire says “I feel very honoured and grateful to receive the Volunteer of the Year Award. I honestly never expected it as through my volunteering I always focus on how I can help others while supporting the charity.”
She tells us she’s looking forward to planning future concerts and other fundraising events, especially Bake a Difference events and pub quizzes, but that “mostly I look forward to meeting and supporting others living with muscle-wasting conditions.”
Sue Barker, MDUK’s Honorary Life President, presented Claire with her award
Sue was very excited to meet Claire, saying
“Reading everything you do, your story, how you help people, the events that you run, the time you give, you are such an inspirational person. We just want to say, from all of us, a huge thank you.
The President’s Awards judges say Claire's story shows the value volunteering can bring to the muscle-wasting community, as well as to the volunteer. They were impressed that “rather than focusing on herself, Claire has become an active and committed volunteer, which has helped her cope better with her own condition.”
MDUK has an outstanding community of volunteers, whose time, expertise, and valued perspectives make a huge difference to all areas of the charity. This award honours a volunteer whose selfless efforts have made a huge difference to our community of people living with muscle-wasting conditions.
Our annual President’s Awards celebrate the fantastic contributions of our community members. Find out more about the awards and the winners here