Stories

Paul’s son, Frankie, was born with muscular dystrophy and recently had his 16th birthday. In celebration of Father’s Day, Paul reflects on what fatherhood means to him, how this has evolved over the past 16 years, and what being a father to a child with a muscle wasting condition means to him.

Dr Chloe Geagan is a clinical psychologist, working in paediatric neuropsychology at the Great North Children’s Hospital and John Walton Muscular Dystrophy Research Centre. She has experience working with people of all ages, although most of her work is with children and teenagers. Dr Geagan particularly values working with young people with neurological conditions, neurodiversity or learning difficulties. We share some of her insights from a talk she gave at our England information days.

Despite having symptoms for over a decade, Sarah was only diagnosed with myasthenia gravis in 2024. Now determined to help others get earlier diagnoses and feel less alone, she’s written about her condition progression whilst not knowing what was happening to her body, how she finally received a diagnosis, and the community she’s found through the charity’s myasthenia gravis support group.

Having recently joined the streaming community on Twitch, we caught up with Liam Quinn to hear about a gaming event we hosted in London and why online gaming is a great way to raise money, awareness and foster a community.

In April 2025, for the first time, our London Marathon team included two people taking part as assisted wheelchair participants after they were successful in the ballot for places. We caught up with Konstantina and Simone who completed the 2025 London Marathon, each accompanied by a team of four support runners.

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?’

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.

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.

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.

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.

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.

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.