This Volunteers’ Week, we’re celebrating the incredible people who give their time, energy and lived experience to support the muscle wasting community. Across our charity, volunteers help people feel less alone. They offer support after diagnosis, create welcoming spaces to connect, raise vital funds, influence research and help shape the future of our work.
Celebrating the volunteers who make our community stronger
Their impact reaches far beyond the hours they give. For many people in our community, volunteers are the people who truly understand.
“Speaking to another mum who was a Peer Support Volunteer meant everything”
For families and individuals navigating a diagnosis, speaking to someone who has been through a similar experience can make all the difference.
As Becky shared: “Speaking to another mum was a turning point. Just knowing she’d been where I was and had come out the other side meant everything. When you first get this diagnosis, you feel completely alone. But there are hundreds of families living with this. That sense of community is the best comfort we’ve found.”
Lisa also reflected on the importance of connecting with someone who understood what she was going through: “It was amazing to chat to somebody who had been where I was. I spoke to him about my feelings and my struggle to adapt to my new lifestyle.
“Being able to open up without judgement was such a freeing process, but I also learnt that I didn’t need to be so scared. It’s helped immensely sharing the highs and lows with someone who understands, and I’m able to look at things from a different perspective now, and I am so thankful for that.”
“We couldn’t deliver the fundraising events we do without our volunteers”
From cheering participants on at challenge events to helping organise community fundraisers, volunteers play a vital role in raising awareness and funding for our work.
Kiera, Head of Challenge Events and Community Fundraising, said: “Our volunteers are at the heart of everything we do. They go above and beyond to support our events, raise vital funds, and champion awareness of muscle wasting conditions in their communities – all in their own time.
“Their impact is huge, and they truly are an extension of our team. Whether it’s joining us at the crack of dawn to set up an event village, dressing up as Wonder Woman for bucket collections, promoting and organising events in their local communities, handing out goody bags, or placing a medal around someone’s neck as they complete a challenge of a lifetime, we simply couldn’t do what we do without them or the time they so generously give.”
“Volunteers give so much to our work and community in Northern Ireland”
In devolved nations, volunteers help ensure people feel seen, supported and connected.
Graham, Northern Ireland Advocacy and Support Officer, reflected on the impact volunteers have in Northern Ireland: “Volunteers give so much to our work and community in Northern Ireland. They generously share their stories and experiences, helping others feel less alone and see that there’s a place here for them. In turn, that’s helped raise awareness locally and make sure Northern Ireland is more visible across the wider organisation too.
“There’s such passion and care in how our volunteers go about things. They’re people you can rely on to be there for others at the hardest times. And just as importantly, they help things feel welcoming and easy, taking the time to make sure people feel comfortable, supported and included. I couldn’t be more grateful.”
“I’ve found being a Lay Research Panel member a really valuable opportunity”
Volunteers also play an important role in shaping research by bringing lived experience and insight into the decisions that matter most.
Ali, a member of the Lay Research Panel (LRP), said: “I’ve found being an LRP member a really valuable opportunity to both give back and grow. We work together to ensure research is relevant and reality-checked and we bring insight that genuinely influences grant funding decisions.
“Reviewing the ambitious project plans of scientists and clinicians who are working towards those breakthroughs that the community really need is interesting, sometimes challenging, but ultimately uplifting. I’ve learned a lot!”
This Volunteers’ Week, we want to say a heartfelt thank you to all our volunteers
Whether you’re supporting someone after diagnosis, fundraising in your local community, sharing your experiences, helping shape research or creating welcoming spaces for others, your contribution matters.
You help make sure nobody has to face a muscle wasting condition alone.
