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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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Researchers test old drugs for potential treatment in spinal muscular atrophy (SMA)
Researchers in the UK and Germany have used specific molecular tools to identify drugs previously approved for use in other diseases that might be useful for treating spinal muscular atrophy.
Read Researchers test old drugs for potential treatment in spinal muscular atrophy (SMA)
A boy in a wheelchair in a new room
“Applying for housing adaptions is a minefield”
Karen has had to find her way around the system of applying for housing adaptions for her son who lives with Duchenne muscular dystrophy. She shares how in their recent move they managed to get the adaptations they needed, although it was a difficult experience. And she gives advice to other families going through the Disabled Facilities Grant (DFG) process.
Read “Applying for housing adaptions is a minefield”
A family on a sofa hugging
We’re calling on the next Government to maintain the UK’s position as a world leading centre for research excellence.
Investing in the UK’s research and development sector is essential for people living with a muscle wasting and weakening condition to benefit from access to life-changing treatments.
Read We’re calling on the next Government to maintain the UK’s position as a world leading centre for research excellence.
A family wearing bright clothing
“Go Bright helps my son find his voice and talk about the community he’s part of”
Eben’s mum, Helen, shares why the whole family get involved in Go Bright and their brightastic plans for next year.
Read “Go Bright helps my son find his voice and talk about the community he’s part of”
Putting carers on the map
In aid of Carers Week, we’re recognising the challenges that many unpaid carers in our community face and what changes we want to see the new government make to support unpaid carers.
Read Putting carers on the map
A photo of a lady talking to a man in an orange t-shirt
“I had to work through 11 years of repressed grief when I was finally diagnosed.”
Sarah had to wait more than a decade to receive a confirmed diagnosis of limb girdle muscular dystrophy (LGMD). She shares how this delay affected her mental health and also about her difficult experiences in the workplace.
Read “I had to work through 11 years of repressed grief when I was finally diagnosed.”
A lady with her arm round a boy in a wheelchair
Finding and enjoying a fundraising project
Sally has been fundraising for our community for over 25 years. She supports us in memory of her godson Jonathan. A keen gardener, Sally shares her thoughts on how opening your garden can support people living with a muscle wasting and weakening condition.
Read Finding and enjoying a fundraising project
Guinness World Record title for charity cycling challenge
In June 2023, Scott Mitchell, 46, from Kendal set off on an eight-day ‘Cycle the Nation’ challenge to go through every county in England. While he didn’t quite make it to all 48, Scott did visit 43 counties and, almost a year after completing the challenge, it was confirmed that he holds the Guinness World Record title for the most UK counties visited by bicycle in one week. Scott takes inspiration from his son, Alex, who lives with Becker muscular dystrophy, and his Cycle the Nation charity challenge raised £7,276.
Read Guinness World Record title for charity cycling challenge
A young boy with his mum, dad and sibling
Adversity > Aspirations > Adapting (an alternate Father’s Day Guide)
Father’s Day comes around once again which also means it’s nearly my birthday! Usually, it falls on the same weekend to the dissatisfaction of my wife, Louise. ‘Costs me a fortune’ is all I hear that weekend! I’ve written blogs around the time of my birthday before but never about Father’s Day and what it means to me. I come from a family where the dads get stuck in and we do our share and will always do anything for others, so I’d like to think that has continued down the family tree.
Read Adversity > Aspirations > Adapting (an alternate Father’s Day Guide)
A photo of a lady sitting in front of a green leafy background
We’re calling for people living with a muscle wasting and weakening condition to get a timely diagnosis, and the earliest access to the right treatment, care and support
Early access to treatment, care and support is essential for people living with a muscle wasting and weakening condition. Being seen by the right specialists as soon as possible is key to ensuring better health outcomes for our community.
Read We’re calling for people living with a muscle wasting and weakening condition to get a timely diagnosis, and the earliest access to the right treatment, care and support
Happy couple pose with flowers on their wedding day
“This marathon was very special to me”: Running the Edinburgh Marathon in memory of husband
On Sunday 26 May, Helen Honour ran the Edinburgh Marathon. This was her fourth marathon having entered one every decade since taking part in the New York Marathon in her twenties, but this one was special as she was running for us in memory of her husband Andrew Crooks and his brother, Alex, who both lived with muscular dystrophy. Andrew died in December 2022, aged 58. Running alongside her friend Beck Addison, together they raised £2,773.
Read “This marathon was very special to me”: Running the Edinburgh Marathon in memory of husband
Two women stand by a pop-up banner at a conference
Limb girdle muscular dystrophy patient conference and standards of care development
Our Director of Research, Kate Adcock, attended two conferences in Amsterdam focused on LGMDR9, a form of limb girdle muscular dystrophy, at the end of May.
Read Limb girdle muscular dystrophy patient conference and standards of care development

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.