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Mother’s promise to dying son to continue making a difference

Anne Peterson is an inspirational mother who has been carrying out a promise following the death of her “beloved” son Paul, to continue to make a difference to the muscle-wasting community. For the past decade, Anne, along with her husband Trevor and an army of friends and family, has been dedicated to the muscular dystrophy cause.
Anne Peterson is an inspirational mother who has been carrying out a promise following the death of her “beloved” son Paul, to continue to make a difference to the muscle-wasting community. For the past decade, Anne, along with her husband Trevor and an army of friends and family, has been dedicated to the muscular dystrophy cause.

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Date Published:
19 May 2023

"I wish I could dance on the outside too” – Inclusivity and advice for Mental Health Awareness Week 2023

This year’s theme for Mental Health Awareness Week is anxiety – one of the most common mental health problems we can face. Louise, a counsellor and psychotherapist, who lives with limb girdle muscular dystrophy, shares her unique perspective on the complex “dance” between physical and mental health to which she, and many of her clients, are trying to learn the moves.
This year’s theme for Mental Health Awareness Week is anxiety – one of the most common mental health problems we can face. Louise, a counsellor and psychotherapist, who lives with limb girdle muscular dystrophy, shares her unique perspective on the complex “dance” between physical and mental health to which she, and many of her clients, are trying to learn the moves.

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Date Published:
15 May 2023

Going the distance for muscular dystrophy research at the Great North Run 2023

Alongside being a busy housekeeper and a doting mum to six-year-old Daisy, Gemma is a keen runner who’s taking on the AJ Bell Great North Run 2023 to raise money for MDUK. It’s a cause that’s deeply important to the 35-year-old; not only did her late dad have myotonic dystrophy, it’s a condition that she and her brother have lived with since birth.
Alongside being a busy housekeeper and a doting mum to six-year-old Daisy, Gemma is a keen runner who’s taking on the AJ Bell Great North Run 2023 to raise money for MDUK. It’s a cause that’s deeply important to the 35-year-old; not only did her late dad have myotonic dystrophy, it’s a condition that she and her brother have lived with since birth.

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Date Published:
12 May 2023

“They encouraged us not to downplay the worst days”: Dad Dean reflects on helpline’s invaluable support

When Esmae and Grace were diagnosed with limb-girdle muscular dystrophy 2A (LGMD2A), their dad Dean was determined to help. After his daughter’s application for Personal Independence Payment (PIP) was rejected, Dean turned to MDUK’s free helpline for some much-needed support.
When Esmae and Grace were diagnosed with limb-girdle muscular dystrophy 2A (LGMD2A), their dad Dean was determined to help. After his daughter’s application for Personal Independence Payment (PIP) was rejected, Dean turned to MDUK’s free helpline for some much-needed support.

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Date Published:
9 May 2023

“Sometimes, having the heating on is the only way I can stop my muscles hurting – so what happens when people like me can’t afford the energy bill?”

Sara is a 37-year-old Diversity and Inclusion Officer who lives with her husband in Wickford, Essex. As someone with muscular dystrophy, Sara has often had to pay out of pocket for essential amenities – from suitable wheelchairs to showering safely in her own home. Now the rising cost of living has Sara worried about what the future holds.
Sara is a 37-year-old Diversity and Inclusion Officer who lives with her husband in Wickford, Essex. As someone with muscular dystrophy, Sara has often had to pay out of pocket for essential amenities – from suitable wheelchairs to showering safely in her own home. Now the rising cost of living has Sara worried about what the future holds.

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Date Published:
4 May 2023

“We spend so much of our lives wishing we were in someone else’s shoes that we often forget to enjoy what we have right now”

Jed Thirkettle is a big believer in enjoying what you have, rather than wishing for the next best thing. Having grown up with muscular dystrophy, Jed’s journey hasn’t been easy, but it's taught him a lot. At a recent MDUK golf day, Jed shared his story – and his hard-earned wisdom – about the power of living in the moment.
Jed Thirkettle is a big believer in enjoying what you have, rather than wishing for the next best thing. Having grown up with muscular dystrophy, Jed’s journey hasn’t been easy, but it's taught him a lot. At a recent MDUK golf day, Jed shared his story – and his hard-earned wisdom – about the power of living in the moment.

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Date Published:
4 May 2023

Recap from the 16th UK Neuromuscular Translational Research conference 2023

We recently co-organised the 16th UK Neuromuscular Translational Research Conference in partnership with colleagues based at the UCL International Centre for Genomic Medicine in Neuromuscular Diseases (ICGNMD). As it was the first face-to-face Translational Research Conference since 2019, we welcomed the opportunity to connect with clinicians and scientists from around the world and hear about their latest research.
We recently co-organised the 16th UK Neuromuscular Translational Research Conference in partnership with colleagues based at the UCL International Centre for Genomic Medicine in Neuromuscular Diseases (ICGNMD). As it was the first face-to-face Translational Research Conference since 2019, we welcomed the opportunity to connect with clinicians and scientists from around the world and hear about their latest research.

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Date Published:
3 May 2023

New findings may increase the speed of research into treatments for Duchenne muscular dystrophy

A recent study suggests that the way clinical trials for Duchenne muscular dystrophy are designed could be changed. This could allow researchers to recruit participants from a larger pool of available candidates – leading to faster timelines.
A recent study suggests that the way clinical trials for Duchenne muscular dystrophy are designed could be changed. This could allow researchers to recruit participants from a larger pool of available candidates – leading to faster timelines.

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Date Published:
28 April 2023
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