Belfast woman Claire Boylan, who lives with rare muscle wasting condition, organises Spirit of Christmas concert in aid of Muscular Dystrophy

Claire Boylan, 40, who was diagnosed with Miyoshi Myopathy, aged 16, has organised the Spirit of Christmas annual concert, which will take place at the New Life City Church, Belfast, hosted by Cool FM presenter and DJ Evanna Maxted.

The evening in aid of Muscular Dystrophy UK, will be bursting with musical talent, including Andrea Begley, winner of The Voice UK 2013, singer-songwriter and Northern Ireland charity ambassador, Daisie Conway, father and daughter duo David and Zoe Curry and Niamh Noade, singer and harpist seen on the Voice Kids.

There will also be performances from Rock Choir - Belfast and Lisburn and many more amazing acts.

Claire, a member of Muscular Dystrophy UK’s Northern Ireland Council, active campaigner and peer support volunteer, has been organising the event since 2019.

She said: “The Spirit of Christmas always feels like the start of the festive season. It’s a wonderful way to get into the Christmas spirit with a night of uplifting music.

"We’re grateful to all of this year’s talent for giving up their time to help us raise awareness and funds for people living with muscle wasting and weakening conditions. Make sure you don’t miss out on this magical evening, get your tickets today!”

Claire, who is passionate about raise awareness and funds for the charity, was awarded the Muscular Dystrophy UK’s President’s Award Volunteer of the Year Award 2022 – and was presented the award virtually by the charity’s Honorary Life President Sue Barker.

At the time Sue said: “Learning everything you do, your story, how you help people, the events that you run, the time you give, you are such an inspirational person.”

Claire, who had to take early retirement at 31, added: “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. I knew what a difference it can make having somebody there for you who has been through it.”

She added: “Having experienced the shock of being diagnosed with a rare condition, when I was 16, I felt very alone. 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 is a lot to deal with.

“I wanted 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.”

Tickets to the concert cost £20 each, or a family ticket (two adults and two children) is £45. Under fives go free. Performances starting promptly at 6.00pm till 10.00pm. The New Life City Church is an accessible venue.

To find out more about the Spirit of Christmas concert and to book tickets, visit: musculardystrophyuk.org/christmas2023