In celebration of International Volunteers Day, we asked three very different types of volunteers to share their story about what their role involves, why they volunteer for our charity, and what they get out of it.
Council, Committee, and Peer Support Volunteering
Peer support volunteering – “I knew it would have helped me when I was first diagnosed”
I was diagnosed with limb girdle muscular dystrophy in my mid-twenties out of nowhere. I’d been giving blood and they found I was very low in iron. It took a long time to find the cause, but that simple check eventually led to a life-changing diagnosis. In those early days, I remember desperately wanting to meet someone older who was living with the condition. I needed to know what the future had in store for me. When I went to my first Muscular Dystrophy UK conference in my late twenties, it was the first time I connected with people who got it. I soon became more involved with the charity, attending the monthly North West Muscle Group meetings and realising how much strength there is in community.
I’ve been a Peer Support Volunteer for five or six years now, which involves being paired with someone from the community who’s looking to chat about the challenges of having a muscle wasting condition, but also sometimes have a laugh and a joke together. I mainly took on the role because I knew it would have really helped me when I was first diagnosed. Often my support is just a coffee or regular phone call where I offer a friendly ear; but sometimes it grows into real friendship, like a man I supported a few years back and then ended up going out to dinner with him and his wife. What matters is having someone who understands the frustration, the reality of slowly getting worse, and how much your mindset has to shift to cope with this. Offering support to others is incredibly rewarding. I’d encourage others to volunteer in some capacity – because you never know who might really need that conversation. – Anthony
Council volunteering – “Being on the Northern Ireland Council allows me to influence the activities and direction of the charity”
I have FSHD and I’ve been involved with Muscular Dystrophy UK for some time. A couple of years ago I decided to get more involved with the charity and I became a member of the Northern Ireland Council. This involves attending meetings every four months where we discuss the work of the charity in Northern Ireland. This includes fundraising, planning events and helping to steer the overall direction of the charity’s work here.
I have over 40 years of lived experience of FSHD and I bring this to the Council role. I worked in the NHS for 30 years and the knowledge and skills from this job are also something that I can contribute.
I feel I can make a positive contribution to Muscular Dystrophy UK in Northern Ireland through my role on the Council and I enjoy being involved in decisions about the charity’s work here. Another benefit is meeting and getting to know others who have various experiences of having a muscle wasting condition.
Being on the Council allows me to work along with others in influencing the activities and direction of the charity and I find it a very rewarding role. – Catherine
Committee volunteering – “the whole experience is packed with energy and humour”
I’ve been volunteering as a member of the Microscope Ball committee for five years. The ball is a Property Industry black tie event that is the main fundraiser for the charity. We help put the event together, sell tables and sponsorship, and generally make sure that the evening is a spectacular bash. The event also provides a platform to help spread understanding about the wide variety of conditions the charity supports. From my own family’s experience and hearing many of the stories told at the ball, what strikes me is how poorly understood these complex conditions are.
I chose to volunteer with Muscular Dystrophy UK following my Mum being diagnosed with Inclusion Body Myositis (IBM), which is a progressive condition that causes muscle inflammation and results in weakness. Mum’s condition has progressed over many years and as a family we have continued to deal with the many challenges. My Mum’s approach to it all has been inspirational to me. The physical, mental, social and administrative challenges are relentless, yet her resilience and fortitude are unwavering. It’s a strength I hope to live up to. I think that when a loved one has health challenges, there’s a feeling of powerlessness for those around them. Volunteering gives me some outlet to combat that feeling, in addition, hoping that the money raised can help make advances in the groundbreaking research that is being undertaken.
The committee are a fantastic bunch, and the whole experience is packed with energy and humour that makes the whole thing a joy. Being able to marry volunteering for a charity where I have a deep personal connection with the industry I have worked in for nearly 25 years is just superb. Having the opportunity to support Muscular Dystrophy UK’s biggest fundraiser and ensure, along with the rest of the team, that it’s a success, is a real privilege. – Adam
