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Stories

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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A man walking with a walking stick. He is smiling. There is a man next to him pushing a wheelchair.
‘I can’t run, but currently I can still walk’ – our Oxford 10k isn’t just for runners
Tristan Boedts, 27, has hiked to Everest Base Camp, done a year-long solo world trip, and walked the Oxford Half Marathon. He also has limb girdle muscular dystrophy (LGMD), a rare, progressive muscle wasting condition, which means he is expected to be in an electric wheelchair by the age of 30. On Sunday 12 May, he took part in the Bidwells Oxford 10k completing the course in just over an hour, walking and assisted by his wheelchair.
Read ‘I can’t run, but currently I can still walk’ – our Oxford 10k isn’t just for runners
Benefits of art therapy for children with muscle wasting conditions
For mental health awareness month, we sat down with Catriona from The Teapot Trust, to chat about how art therapy can help children with long term conditions, and the sessions we’ve been running with The Teapot Trust.
Read Benefits of art therapy for children with muscle wasting conditions
Two brothers in school uniform as children - they both have cardigans, ties and shirts on.
Meet researcher Dr William Duddy: ‘Personal experience helped shape my career’
Dr William Duddy was motivated to follow a career in research after his brother was diagnosed with Duchenne muscular dystrophy (DMD) at the age of seven. Our Research Communications Officer, Andrea, had a chance to catch up with him. He shared his family’s experience with Duchenne, and talked about current research and what he hopes the future will bring.
Read Meet researcher Dr William Duddy: ‘Personal experience helped shape my career’
A lady and a man shaking hands in a garden. The lady is wearing an orange muscular dystrophy uk t-shirt.
Corporate partnership with Nurture Group confirmed ahead of RHS Chelsea Flower Show
Nationwide green services provider Nurture Group has become a corporate partner of the charity, with the launch planned to take place at our Forest Bathing Garden at the RHS Chelsea Flower Show 2024.
Read Corporate partnership with Nurture Group confirmed ahead of RHS Chelsea Flower Show
“My flight home from a holiday has left me traumatised.”
Kiera shares the “awful” experience she was put through when recently flying back from a holiday in Poland. She discusses the discrimination faced at Krakow airport, the lack of staff training about mobility aid regulations, and the terrible customer service response after submitting a complaint.
Read “My flight home from a holiday has left me traumatised.”
Enjoying nature as a disabled family
Mum to fun loving seven-year-old Josie, Charlotte shares how important spending time in nature is for her family. She explains what Josie loves about the great outdoors, and why creating an accessible garden at the Chelsea Flower Show will be eye-opening for all.
Read Enjoying nature as a disabled family
“It’s an honour to provide families with support” – a nurse’s career journey
To celebrate International Nurses Day, we sat down with Rachel Salmon, Neuromuscular Clinical Nurse Specialist for South East Wales, to find out about her career and the support she provides for many families in the muscle wasting community.
Read “It’s an honour to provide families with support” – a nurse’s career journey
Myology 2024 Paris Conference Update
Myology 2024 Paris conference update
Our Forest Bathing Garden at the RHS Chelsea Flower Show 2024 will offer an accessible, immersive forest bathing experience.
Read Myology 2024 Paris conference update
An older man and woman looking at eachother lovingly. They are outside.
Long-standing volunteers to play key ‘race starter’ role in sell-out Bidwells Oxford 10k
Read Long-standing volunteers to play key ‘race starter’ role in sell-out Bidwells Oxford 10k
Taking part in a clinical trial and finding comfort in my music
Our Forest Bathing Garden at the RHS Chelsea Flower Show 2024 will offer an accessible, immersive forest bathing experience.
Read Taking part in a clinical trial and finding comfort in my music
News update written in block capital letters in yellow against an orange background.
We’re calling for better understanding of neuromuscular conditions to speed up referral and improve vital support
Findings from our recent survey reveal that people living with a muscle wasting or weakening condition are often misunderstood by healthcare professionals and are not referred at the earliest opportunity to specialist services.
Read We’re calling for better understanding of neuromuscular conditions to speed up referral and improve vital support
How you’re shaping our work
At the end of 2023 we wanted to build a better understanding of the priorities of people living with a muscle wasting and weakening condition to inform our work.
Read How you’re shaping our work

SHARE YOUR STORY

Telling your story is a powerful and positive way of showing what it’s like to live with a muscle wasting or weakening condition, or to be a loved one of somebody who has a condition. Your story has the power to inspire and give hope to others and remind them that they are not alone.