Read real life stories from people in the muscle wasting and weakening community. Browse our blogs about a range of topics we think will interest you.
STORIES FROM OUR COMMUNITY
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Being a Muscle Group chair has allowed me to form new friendships
Tony became the East Midlands Muscle Group Chair in 2023. He shares his story about why he wanted to be a volunteer, what’s involved, and what he’s gained from the experience.
“Growing the OPMD community has helped me with my own condition progression” – celebrating OPMD awareness day
This oculopharyngeal muscular dystrophy (OPMD) awareness day, Bryan shares his journey living with OPMD, how over the years his involvement in the charity has grown along with the development of the OPMD group, and why awareness days for the rarer muscle wasting conditions are so important.
“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.
“I use my life experiences to support others in the community” – being a Peer Support Volunteer
Joan has been receiving support from us for over 40 years. To share the wealth of knowledge she’s gained about living with spinal muscular atrophy (SMA), she became a Peer Support Volunteer for the charity.
Long-standing volunteers to play key ‘race starter’ role in sell-out Bidwells Oxford 10k
Ian and Mavis Hale have a long history with Bidwells Oxford 10k. After volunteering nearly every year since its inception, this year, the couple will be the official race starters. Ian tells us how they first got involved.
Turning a diagnosis into a purpose: John Foxwell
Retired headteacher, John Foxwell, has made huge strides in raising awareness of Pompe disease following his diagnosis six years ago. He tells us about how life has changed for the better since his diagnosis, and all he’s done for the Pompe community.
Warrior Swan: What its really like living with a muscle wasting condition
Tiffany is used to putting on a smile and brave face, but she admits the reality of living with a muscle wasting condition can be testing. After receiving support from our information, advocacy and support team, Tiffany decided she wanted to give back and become a volunteer so she can help other people living with similar conditions.
From volunteering for NASA to improving standards of care for people with Duchenne muscular dystrophy – this is Daniel’s story
Daniel believes everyone should have the chance to make the world a better place – and that when an opportunity knocks, you need to grab it with both hands. The 48-year-old reflects on his time managing a global project pioneered by NASA, and on how living with Duchenne muscular dystrophy affects his life – but by no means defines it.
“We have to worry about whether we can afford to look after ourselves”
Trevor, who’s 62, has Becker muscular dystrophy. He took early retirement eight years ago and now volunteers as a peer support volunteer with Muscular Dystrophy UK. Following the launch of our recent cost of living report, Trevor shares how the financial crisis is limiting his freedoms and becoming increasingly worrying.
‘Volunteering with MDUK has played such a valuable role in my life’
Claire Boylan, 39, shares why she has volunteered so passionately for MDUK – from campaigning at the Northern Ireland Executive to organising the annual Spirit of Christmas fundraising concerts.
‘A big 6ft man dressed as Wonder Woman really gets people talking’
To kick off Volunteers’ Week 2022, Wonder Woman runner Phil Grant, from Oxfordshire, chats to us about how he got involved with the charity and why he’s been supporting Muscular Dystrophy UK (MDUK) for more than 30 years.
Dr Andrew Robertson – a long-standing volunteer
Diagnosed with limb girdle muscular dystrophy at 17 years old, Andrew has concentrated on having a great quality of life.