Volunteering with MDUK has played such a valuable role in my life since I had to take early retirement on medical grounds at the age of just 31.
I’d had a career in customer services at Belfast City Council but, having been diagnosed with Miyoshi Myopathy when I was 16-years-old, my symptoms were causing me to take a lot of sick leave by the time I reached my early 30s so retirement was the best option.
It was difficult having to let go of my career so young, but I was determined to keep busy and to 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.
By volunteering with 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 and feeling very alone, I knew what a difference it can make having somebody there for you who has been through it.
I also found this connection as a volunteer made me feel less alone and helped me find better ways to cope with my own condition. I got involved with the Northern Ireland Council for Muscular Dystrophy UK to help campaign for better funded neuromuscular services and support.
Unlike in England, we don’t have a ‘one-stop-shop’ multidisciplinary clinic for muscle-wasting conditions, so people have to attend disparate clinics miles apart to get the medical services they need. As secretary, I have taken part in All Party Group for Northern Ireland meetings at Stormont, where we meet with politicians and NHS leaders to press for improvements and ensure the needs of people with MD are highlighted in the Northern Ireland Assembly.
My proudest moments as a volunteer, however, have probably been at the Spirit of Christmas fundraising concerts that I have organised for the last three years.
I co-organised the first concert, in 2019, with a colleague from the NI Council for MDUK – and through some networking I booked some great musicians including a tenor who is well known here and managed to secure Stormont as the venue.
I was particularly proud that the most recent concert - which was both an in person and virtual event - made just over £4000 for MDUK. It’s so satisfying knowing that the funds will go towards research into treatments for muscle-wasting conditions and support for people affected.
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.
If you’d like to volunteer with muscular dystrophy, please get in touch at volunteering@musculardystrophyuk.org