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
Filter by type
Celebrating the volunteers who make our community stronger
This Volunteers’ Week, we’re celebrating the incredible people who give their time, energy and lived experience to support the muscle wasting community. Across our charity, volunteers help people feel less alone. They offer support after diagnosis, create welcoming spaces to connect, raise vital funds, influence research and help shape the future of our work.
A Mother’s march covering 249,000 steps in May
Mother-of-two Louise Desouza set herself a challenge of covering 249,000 steps across the month of May, inspired by her four-year-old-daughter Deedee, who was diagnosed with nemaline myopathy earlier this year.
Since my FSHD diagnosis, I’m focused on staying active in a way that works for me
Henry was diagnosed with FSHD 11 years ago, aged 18. He shares how the condition impacts his day-to-day life and why, together with his family, he decided to start a Backyard Ultra Marathon events company.
Our Amazing Maisie’s story: from first symptoms to fundraising for LMNA research
Laura's daughter Maisie was diagnosed with LMNA-related muscular dystrophy. She shares their journey and why they're determined to fundraise for LMNA.
“My parents were told there would never be a treatment for my condition – now there are three”
Becca lives with spinal muscular atrophy (SMA) type 2. She shares her reflections on how the treatment landscape has changed in her lifetime, the improvements she’s seen from Risdiplam, and the importance of improving access to treatment for all.
The challenges of using a ventilator mask in the age of facial recognition technology
Meriel and Daniel share their difficulties with identity verification and facial recognition software, includingwhat they feel should be done to improve inclusivity.
Fundraiser dedicates Oxford 10k run to his partner
Chris will join over 7,500 runners at Bidwells Oxford 10k when he runs for his inspirational partner, Liz, who was diagnosed with FSHD.
Doctors don’t seem to care that I’m a manifesting carrier of Duchenne with heart problems
Susan repeatedly warned doctors about being a manifesting carrier of DMD (duchenne muscular dystrophy). She shares her journey and her advice.
“I always dreamed of running”: wheelchair user to self-propel round iconic London Marathon
Jono Whitehead is fulfilling a lifelong dream as he prepares to self-propel the entire 26.2 miles at TCS London Marathon on Sunday 26 April with his brother Mat running alongside him.
My parents were told LGMD would stop me living life: now I’m married, have a career and my own disability podcast
Zoe, who lives with LGMD, reflects on her career, running her own podcast, and how she's navigated her condition and marriage with her husband.
‘Making my dream a reality’: Taking part in my first London Marathon thanks to specialist wheelchair
Kiera, who lives with a rare form of limb girdle muscular dystrophy, will take part in the London Marathon, hoping to raise £10,000.
“I’m here too”: my experience as the sibling of someone with Duchenne
Dani shares her experience of being a sibling to her brother, John, who lives with Duchenne muscular dystrophy. She writes about the complicated dynamic of this, including growing up together, learning to live with anticipatory grief and guilt, as well as being a carrier of the condition herself.