Skip to content

“There are so many reasons why I love volunteering”

To celebrate Volunteers Week, our Presidents Awards Volunteer of the Year winner, Amanda Hayes, looks back at the volunteering opportunities she’s taken on over the years.

Women on a beach with sand stretching to the sea

At 58 years old, I’ve been volunteering with Muscular Dystrophy UK for around 15 years now. I was put in touch with the helpline team in my 30s when I was struggling with my disability benefits reassessment. Neeru helped me so much and I decided I wanted to give something back. My involvement in different areas of volunteering spiralled from there really.

“I spend most of my free time doing voluntary work and enjoy it so much!”

MyRealWorld MG App

Anytime I’ve been asked if I want to get involved in something to support the community, I’ve always been ready to help. So I volunteer in several different ways. A few years ago, I was asked to support with the MyRealWorld MG app – a data collection platform to find out more about the quality of life for people living with myasthenia gravis. It’s a global study that asks participants to fill out monthly surveys. The project came to an end recently, so I’ve been asked to be on the registry board which is a ten year commitment. We’re hopeful this will provide interesting data that can be used to support the myasthenia gravis community.

Chairing the Myasthenia Gravis support group

My latest volunteering opportunity has been chairing the myasthenia gravis support group which I set up with Muscular Dystrophy UK last year. The engagement we’ve received has been phenomenal and shows the real need for groups like this. We usually have a virtual meeting every three months (although due to its popularity we’re looking at increasing this). It’s just a really lovely, coffee morning type get together.

It’s a chance for people with the same condition to share their highs and lows, ask questions, or simply have a chat with others who know what you’re going through. We also have guest speakers in some of the sessions, such as a speech and language therapist. These are always informative and interesting.

Speaking at events

I’ve given two speeches at Muscular Dystrophy UK events which have been a real confidence booster. The first one was very intimating. I must have sent a dozen emails to the team asking questions as it was out of my comfort zone. They were so supportive and gave me constant reassurance that I would do great. By the second one, I had grown in confidence and was able to enjoy it more. They’ve been a real eye-opener and have made me realise I’d like to go back to work.

Being awarded Volunteer of the Year

I was so shocked when I received Volunteer of the Year at the President’s Awards.

“It was an absolute honour. That award wasn’t just for me; it was for everyone who selflessly gives their time with a smile to support the community.”

There’re so many reasons why I love volunteering. Knowing that you’re giving people a space to receive support gives me more satisfaction than anything. Lots of people in the community in recent years haven’t been able to receive as much support from their clinicians as they don’t have the time. So, it’s vital we can find that support elsewhere.

I don’t always have the answers and I can’t always reassure someone that everything will be alright but knowing that somebody is there at the end of the phone who knows how you’re feeling is invaluable.

The whole team at Muscle Dystrophy UK are always there to help volunteers if there’s anything you’re unsure about. It’s amazing how much this little group has supported me. I’d recommend volunteering to everyone.

Find out more about how you can volunteer with us here.

Stay connected with our community

Get the latest news, inspiring stories, upcoming events, and valuable support services delivered straight to your inbox.