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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“Beyond the physical: navigating the mental health challenges of muscle wasting conditions”
For Mental Health Awareness Month, we asked people in our community: ‘What aspects of your mental health do you struggle with most?’ and ‘What helps you cope on your hardest days?’
“His new all-terrain wheelchair has given our son his smile back.”
Lisa, mum to Alfie, shares how receiving an all-terrain wheelchair for Alfie through our Joseph Patrick Trust (JPT) grant has been life changing for the whole family.
“My dream of being a professional footballer was crushed by my diagnosis – here’s how I found a new purpose.”
Humaar was a budding sports fanatic growing up, but when he was diagnosed with limb girdle muscular dystrophy at age 15, his life changed. He shares how the constant questions from fellow students impacted his mental health, the challenges of accepting the progression of his condition, and how he’s managed to stay part of the sports community he loves.
“Finding creative adaptions has allowed me to juggle being a mum and running my own business.”
Lynsey is a single mum, businesswoman, and lives with a muscle wasting condition. Finding it increasingly challenging to find workplaces that suited her accessibility needs, she decided to set up her own business. Now thriving in her career and motherhood, she shares her journey to this point, and how her openness to find creative adaptions has allowed her to find success.
Honouring the heart of care: celebrating neuromuscular care advisors this International Nurses Day
This International Nurses Day, we want to recognise the amazing work that the care advisors we work with do for people in the muscle wasting community. For many in our community, care advisors support them tirelessly in providing holistic care and co-ordinating different health professionals who provide their care to ensure they have the best possible quality of life.
“Plenty of people don’t breathe in the conventional way with modern ventilation”– my research projects as someone with a muscle wasting condition
Suzanne is a researcher at the University of Sheffield and Pathfinders Neuromuscular Alliance. She lives with spinal muscular atrophy (SMA). Suzanne shares her latest research projects on what it truly means to breathe, her own experiences of bone health and why this study is important, and her excitement about being back on our Northern Ireland Council.
“My son’s biggest wish is for ‘a new medicine because then he might be quicker on his feet.’ It breaks my heart he’s being denied that chance” – waiting for givinostat
Sam’s family shares the emotional toll of waiting for access to givinostat, a treatment that could help slow the progression of his Duchenne muscular dystrophy. Every day of delay matters.
PhD student living with LGMD to play key race starter role in the Bidwells Oxford 10k
Tristan Boedts is currently studying for a PhD and has a long track record of adventures and challenges, including a year-long solo trip and hiking to Everest Base Camp, as well as taking part in last year’s Bidwells Oxford 10k. He also has limb girdle muscular dystrophy (LGMD). Tristan tells us why he’s excited to be our official race starter for the Oxford 10k.
Running my first 10k in support of my grandad
On Sunday 11 May, Abby Brammer is taking part in the Bidwells Oxford 10k, inspired by her grandad who lives with muscular dystrophy. Hoping to raise money as well as increasing awareness of muscle wasting conditions, Abby will be joined by thousands of others who have already signed up to take part. She tells us what motivated her to take on her first 10k run.
“We want to give something back”: siblings run Half Marathon in support of mum
On Sunday 6 April 2025, Alex Hughes took part in the London Landmarks Half Marathon. Inspired by her mum, who lives with a rare muscle wasting condition, Alex was joined by her sister Charlotte, twin brothers Tom and Matthew, and family friend Tom Harrison. She explains what motivates her and her family to run and fundraise for us.
The things people don’t see: the everyday challenges of living with a muscle wasting condition
For so many in our community, the small difficulties faced in society can be just as challenging as the muscle wasting condition itself. We asked you to share the everyday frustrations you experience, and some common themes came through like accessibility, a lack of understanding, and managing care.
In conversation: Director Benjamin Ree on The Remarkable Life of Ibelin