Stories

During the month of July, the ‘Dumbbell Dozen’ led by West Mersea local Colin Morgan, 67, will attempt to lift 1,000 tonnes – the equivalent weight of a fully laden Boeing 747 jumbo jet plus an Airbus A380 super jumbo

Grace, who’s 14 and lives with congenital myopathy, received an electric wheelchair through a partnership with our Joseph Patrick Trust grant giving arm and Whizz Kidz. She shares how challenging life was when she only had a manual wheelchair, the freedom her new electric wheelchair has given her, and why grants like this are important.

Wilson and Hannah Lam from London are taking on our Pedal Paddle Peak – Lake District challenge, which involves a 34km cycle, 3km canoe paddle and 17km hike to the peak of Helvellyn mountain. Joined by close friends and family, the couple are doing the challenge in support of their son Lance, 4, who lives with Duchenne muscular dystrophy. We caught up with them to find out why they signed up.

Shelly Rodriguez is a Myasthenia Gravis Nurse Specialist at St George’s Hospital. In recognition of Myasthenia Gravis Awareness Month, she shares what led her to this role, how she supports patients, and what she’s learnt about managing the condition over the years.

As the UK heats up, the thought of a seaside visit with the sounds of lapping waves and falling sand between your toes sounds dreamy. However, for those living with a muscle wasting and weakening condition (or indeed anyone with a disability) the thought of a beach day, soon becomes a logistical nightmare.

Leanne and her two daughters, Evie and Martha, have facioscapulohumeral muscular dystrophy (FSHD). On this FSHD awareness day, Leanne shares what it’s like being a parent to children who have the same condition as her, how the severity of their symptoms all differ, and the recent fundraising her teenage daughter Evie has done with her friends.

On 17 May, James Anderson set off to start his challenge – climbing the three highest peaks in the UK within 24 hours, in support of his eight-year-old son Max who lives with Duchenne muscular dystrophy. He was joined by a few close friends and family and together they raised over £5,400. We spoke to James to find out why he took on the challenge.

"Coming out." For many, the phrase makes people think of a single, life-changing event. But what if coming out is a path you navigate every single day? This Pride month, as we celebrate the courage and diversity of the LGBTQ+ community, I want to share a more personal reflection – one that explores this idea of continuous "coming out," not just as a gay man, but also as someone living with a disability.

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.