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We need you for focus group to discuss importance of bone health and osteoporosis in adults with Duchenne

We’re delighted to announce that we are co-hosting a focus group discussion on the importance of bone health and osteoporosis in adults with Duchenne muscular dystrophy. This is alongside Dr Jarod Wong, Senior clinical lecturer and consultant paediatric endocrinologist; Dr Shima Abdelrahman, Post-Doctoral Research Assistant at the University of Glasgow and Action Duchenne.
We’re delighted to announce that we are co-hosting a focus group discussion on the importance of bone health and osteoporosis in adults with Duchenne muscular dystrophy. This is alongside Dr Jarod Wong, Senior clinical lecturer and consultant paediatric endocrinologist; Dr Shima Abdelrahman, Post-Doctoral Research Assistant at the University of Glasgow and Action Duchenne.

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Date Published:
31 July 2023

London Lodge 108 Raises Over £5,600 for Muscular Dystrophy UK

Muscular Dystrophy UK would like to thank the London Lodge 108 for their donation of £5629.30. The Charity were selected as charity of the year by Richard Spooner. As part of his nomination, the Lodge organised a Ladies Dinner on the 26th of November raising £4,110 featuring a raffle and food. Alongside this, the generosity of the members through out the year raising over £1500.

Richard Spooner of Lodge 108 says:

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Date Published:
31 July 2023

MDUK 2023 Allied Health Professionals Virtual Conference

This July, we held our 2023 Allied Health Professionals (AHP) Virtual Conference. Attended by over 130 cross-specialist AHPs and student AHPs, the conference offered the chance to develop confidence, skills, and the sector’s understanding of multidisciplinary aspects of neuromuscular care.
This July, we held our 2023 Allied Health Professionals (AHP) Virtual Conference. Attended by over 130 cross-specialist AHPs and student AHPs, the conference offered the chance to develop confidence, skills, and the sector’s understanding of multidisciplinary aspects of neuromuscular care.

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Date Published:
28 July 2023

Call for more fully accessible toilets

  • Over a quarter of a million people in the UK in need of such facilities
  • Almost 2,000 Changing Places toilets currently available in the UK – with more needed
  • Changing Places Awareness Day highlights the need for more fully accessible toilets

Today (Wednesday 19 July) is Changing Places Awareness Day – the annual event highlighting the importance of fully-accessible toilets needed by more than a quarter of a million people in the UK.

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Date Published:
19 July 2023

If I had a magic wand that could go back and change my entire life to not having been disabled, would I do it?

During Disability Pride Month, which celebrates the creativity, diversity, and achievements of people who identify as disabled, our Employability Officer, Jack, who lives with muscular dystrophy, shares his reflections on coming to terms with disability as a label.
During Disability Pride Month, which celebrates the creativity, diversity, and achievements of people who identify as disabled, our Employability Officer, Jack, who lives with muscular dystrophy, shares his reflections on coming to terms with disability as a label.

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Date Published:
19 July 2023

Changing Places Awareness Day: reflections on a year of significant progress

As co-chairs of the Changing Places Consortium, we work with venues, government departments, suppliers, and our amazing campaigners to call for Changing Places toilets to become a mandatory requirement under building regulations for all large public places, like shopping centres, and major leisure venues. To mark Changing Places Awareness Day, we’re celebrating some of the fantastic progress that’s been made and key events from the last year.

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Date Published:
19 July 2023

A woman is walking 20 miles in the Dundee Kiltwalk to raise money for Muscular Dystrophy UK

St Andrews-based business owner, Ashley Horth, is gearing up to take part in the Dundee Kiltwalk to support her husband of 16 years.
St Andrews-based business owner, Ashley Horth, is gearing up to take part in the Dundee Kiltwalk to support her husband of 16 years.

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Date Published:
18 July 2023

Wolverhampton man with muscle-wasting condition raises £15k at charity golf day

Wolverhampton retiree, David Salt hosted his 15th annual charity golf day, at South Staffordshire Golf Club, and raised more than £15,000 for Muscular Dystrophy UK.
Wolverhampton retiree, David Salt hosted his 15th annual charity golf day, at South Staffordshire Golf Club, and raised more than £15,000 for Muscular Dystrophy UK.

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Date Published:
18 July 2023

The sky's the limit - friendship, fundraising and facing fears together: Jessie and Hayley's story

When 26-year-old Hayley began experiencing double-vision, she could never have guessed that a year later it would lead to her being diagnosed with a muscle-wasting condition. As Hayley adjusts to a new diagnosis, her best friend and housemate Jessie is preparing to jump out of a plane to raise money for MDUK – and to raise awareness of conditions like Hayley’s.
When 26-year-old Hayley began experiencing double-vision, she could never have guessed that a year later it would lead to her being diagnosed with a muscle-wasting condition. As Hayley adjusts to a new diagnosis, her best friend and housemate Jessie is preparing to jump out of a plane to raise money for MDUK – and to raise awareness of conditions like Hayley’s.

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Date Published:
4 July 2023

Muscular Dystrophy UK-funded researchers identify an approach to making muscles in the laboratory

Significant steps have been made towards developing pre-clinical muscle models to potentially speed up the availability of new treatments for muscular dystrophy. This is the result of hard work by researchers at University College London and the Francis Crick institute, including PhD student Moustafa Khedr and Dr Luca Pinton, led by Professor Francesco Saverio Tedesco.
Significant steps have been made towards developing pre-clinical muscle models to potentially speed up the availability of new treatments for muscular dystrophy. This is the result of hard work by researchers at University College London and the Francis Crick institute, including PhD student Moustafa Khedr and Dr Luca Pinton, led by Professor Francesco Saverio Tedesco.

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Date Published:
3 July 2023

Meet the Panel Calling for Newborn Screening for Rare Conditions

In April, we held our All-Party Parliamentary Groups for muscular dystrophy meeting to discuss findings from the inquiry into newborn screening for rare conditions that the group conducted between October 2022 and February 2023. Hear from our panel of experts who are calling for newborn screening for rare conditions.
In April, we held our All-Party Parliamentary Groups for muscular dystrophy meeting to discuss findings from the inquiry into newborn screening for rare conditions that the group conducted between October 2022 and February 2023. Hear from our panel of experts who are calling for newborn screening for rare conditions.

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Date Published:
22 June 2023

The latest FSHD research updates from the FSHD Society’s 30th annual International Research Congress

Muscular Dystrophy UK Director of Research Innovation, Dr Kate Adcock, provides an update on her recent attendance at the FSHD Society’s 30th annual International Research Congress in Milan. The conference brings together scientists and clinical experts from across the world to discuss FSHD research.
Muscular Dystrophy UK Director of Research Innovation, Dr Kate Adcock, provides an update on her recent attendance at the FSHD Society’s 30th annual International Research Congress in Milan. The conference brings together scientists and clinical experts from across the world to discuss FSHD research.

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Date Published:
20 June 2023

Recognising and supporting carers in the community, and the challenges they face

This week is Carers Week, an annual awareness campaign led by Carers UK that highlights the challenges of unpaid care and recognises the impact carers have on their communities.
This week is Carers Week, an annual awareness campaign led by Carers UK that highlights the challenges of unpaid care and recognises the impact carers have on their communities.

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Date Published:
7 June 2023

Scientists identify a new treatment approach for Charcot-Marie-Tooth

Researchers at the UCL Queen Square Institute of Neurology in London, have developed a new treatment approach for the genetic neuromuscular condition Charcot-Marie-Tooth disease (CMT). Published in the JCI Insight journal, the approach indicates that boosting levels of a critical protein called BDNF in CMT muscle can improve some key features of the condition.
Researchers at the UCL Queen Square Institute of Neurology in London, have developed a new treatment approach for the genetic neuromuscular condition Charcot-Marie-Tooth disease (CMT). Published in the JCI Insight journal, the approach indicates that boosting levels of a critical protein called BDNF in CMT muscle can improve some key features of the condition.

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Date Published:
6 June 2023

‘As a shy teenager, volunteering really pushed me out of my comfort zone – for the better’

Jodie Whitham, 30, says it’s the unexpected conversations, new experiences and opportunities for personal growth that have her hooked on volunteering.
Jodie Whitham, 30, says it’s the unexpected conversations, new experiences and opportunities for personal growth that have her hooked on volunteering.

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Date Published:
5 June 2023

Supporting someone living with myasthenia gravis – share your experience to further new treatment decisions

This year, the National Institute of Health and Care Excellence (NICE) is appraising three potential treatments for myasthenia gravis to decide whether they should be recommended for use by the NHS. We will be engaging in the appraisal processes, working with our entire community and other patient organisations to ensure that the views and experiences of people affected by myasthenia gravis are taken into account.
This year, the National Institute of Health and Care Excellence (NICE) is appraising three potential treatments for myasthenia gravis to decide whether they should be recommended for use by the NHS. We will be engaging in the appraisal processes, working with our entire community and other patient organisations to ensure that the views and experiences of people affected by myasthenia gravis are taken into account.

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Date Published:
2 June 2023

(Sky)dive into research – my chat with Professor Volker Straub

MDUK’s research communications officer Dr Andrea Gubas met up with Professor Volker Straub, director of the John Walton Muscular Dystrophy Research Centre at Newcastle University, to chat to him about his upcoming team skydiving fundraiser, the importance of teamwork, and the research undertaken at the John Walton Muscular Dystrophy Research Centre.
MDUK’s research communications officer Dr Andrea Gubas met up with Professor Volker Straub, director of the John Walton Muscular Dystrophy Research Centre at Newcastle University, to chat to him about his upcoming team skydiving fundraiser, the importance of teamwork, and the research undertaken at the John Walton Muscular Dystrophy Research Centre.

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Date Published:
26 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

Good luck to all our MDUK marathon runners going the extra mile for people living with muscle-wasting conditions

This Sunday 23 April 2023, 127 runners will don the MDUK colours and fasten their running shoes before taking on the 26.2-mile TCS London Marathon as part of #TeamOrange. We caught up with some of the squad to find out why they’ve decided to take on the challenge and how they’re feeling about the big day.
This Sunday 23 April 2023, 127 runners will don the MDUK colours and fasten their running shoes before taking on the 26.2-mile TCS London Marathon as part of #TeamOrange. We caught up with some of the squad to find out why they’ve decided to take on the challenge and how they’re feeling about the big day.

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Date Published:
20 April 2023

New insights into the complexities of Emery-Dreifuss Muscular Dystrophy

MDUK-funded research by Professor Eric Schirmer and his team at the University of Edinburgh sheds light on our understanding of Emery-Dreifuss muscular dystrophy and offer potential avenues for treatments.
MDUK-funded research by Professor Eric Schirmer and his team at the University of Edinburgh sheds light on our understanding of Emery-Dreifuss muscular dystrophy and offer potential avenues for treatments.

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Date Published:
31 March 2023

Retired England rugby player Charlie Hodgson tackles the London Marathon

Charlie Hodgson, the retired Saracens, Sale Sharks, and England rugby union player, is taking on the London Marathon in support of Muscular Dystrophy UK (MDUK). He tells us about why he decided to swap his rugby boots for his running shoes in support of people living with muscle-wasting conditions.
Charlie Hodgson, the retired Saracens, Sale Sharks, and England rugby union player, is taking on the London Marathon in support of Muscular Dystrophy UK (MDUK). He tells us about why he decided to swap his rugby boots for his running shoes in support of people living with muscle-wasting conditions.

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Date Published:
15 March 2023

”Typing up a storm – why we need better awareness of disabilities and adjustments in the workplace”

Recent headlines about the Twitter exchange between its CEO, Elon Musk, and a former Twitter employee, who has a type of Muscular Dystrophy, opened up conversations about perceptions of disability in the workplace. The employee, Halli Thorleifsson, is accused of “doing no actual work” and “claiming an excuse that he had a disability which prevented him from typing yet was simultaneously tweeting up a storm.” Muscular Dystrophy UK’s Employment Officer, Jack, tells us why this is sadly a familiar story he has seen before.
Recent headlines about the Twitter exchange between its CEO, Elon Musk, and a former Twitter employee, who has a type of Muscular Dystrophy, opened up conversations about perceptions of disability in the workplace. The employee, Halli Thorleifsson, is accused of “doing no actual work” and “claiming an excuse that he had a disability which prevented him from typing yet was simultaneously tweeting up a storm.” Muscular Dystrophy UK’s Employment Officer, Jack, tells us why this is sadly a familiar story he has seen before.

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Date Published:
8 March 2023

Research reveals new cause of muscle weakening in spinal muscular atrophy

New research carried out by MDUK-funded researchers has identified a new cause of muscle weakening in spinal muscular atrophy during early muscle development. Dr Melissa Bowerman’s team, including her PhD student Emma Sutton, at the University of Keele, Staffordshire, have been investigating the mechanisms that drive skeletal muscle wasting. Their findings could eventually enhance existing treatments for spinal muscular atrophy and similar conditions.
New research carried out by MDUK-funded researchers has identified a new cause of muscle weakening in spinal muscular atrophy during early muscle development. Dr Melissa Bowerman’s team, including her PhD student Emma Sutton, at the University of Keele, Staffordshire, have been investigating the mechanisms that drive skeletal muscle wasting. Their findings could eventually enhance existing treatments for spinal muscular atrophy and similar conditions.

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Date Published:
7 March 2023

To coincide with Rare Disease Day FSHD Patients across Europe say what they want from clinical trials

Sheila Hawkins is a member of MDUK’s Services Development Committee, an active volunteer, and former Trustee. She is also President and Board member of FSHD Europe, who have published the findings of a major survey exploring what people living with Facioscapulohumeral muscular dystrophy (FSHD) want to see prioritised in the development of treatments. Sheila tells us about the key findings and their implications.
Sheila Hawkins is a member of MDUK’s Services Development Committee, an active volunteer, and former Trustee. She is also President and Board member of FSHD Europe, who have published the findings of a major survey exploring what people living with Facioscapulohumeral muscular dystrophy (FSHD) want to see prioritised in the development of treatments. Sheila tells us about the key findings and their implications.

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Date Published:
28 February 2023

“I am proud to work with MDUK in any way I can to help make a difference”

Gabby Logan presents Emma-Jayne Ashley with the Carer of the Year Award in recognition of her actions as an expert carer who has gone above and beyond her caring responsibilities, as well as supporting the wider care community.
Gabby Logan presents Emma-Jayne Ashley with the Carer of the Year Award in recognition of her actions as an expert carer who has gone above and beyond her caring responsibilities, as well as supporting the wider care community.

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Date Published:
24 February 2023

“I love making change and making people feel included”

Tiffany Hesson has won the Peter and Nancy Andrews Community Achievement President’s Award, for being prepared to put in the time and effort to make change happen to improve diverse representation in the muscle-wasting community.
Tiffany Hesson has won the Peter and Nancy Andrews Community Achievement President’s Award, for being prepared to put in the time and effort to make change happen to improve diverse representation in the muscle-wasting community.

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Date Published:
24 February 2023

“I’m passionate about standing up for neuromuscular conditions”

Gabby Logan presents Dr Vino Vivekanandam with Muscular Dystrophy UK’s Early Career Scientist of the Year President’s Award in celebration of her outstanding tenacity and drive in trying to advance our understanding of muscle conditions and improve the quality of patient care.
Gabby Logan presents Dr Vino Vivekanandam with Muscular Dystrophy UK’s Early Career Scientist of the Year President’s Award in celebration of her outstanding tenacity and drive in trying to advance our understanding of muscle conditions and improve the quality of patient care.

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Date Published:
24 February 2023

“Volunteering makes me feel less alone and helps me cope with my condition”

Sue Barker presents Claire Boylan with the Volunteer of the Year President’s Award in recognition of her selfless efforts which have made a huge difference to people living with muscle-wasting conditions.
Sue Barker presents Claire Boylan with the Volunteer of the Year President’s Award in recognition of her selfless efforts which have made a huge difference to people living with muscle-wasting conditions.

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Date Published:
23 February 2023

MDUK Annual President’s Awards

Our annual President’s Awards, chaired by Muscular Dystrophy UK's President Gabby Logan, celebrate the strength and diversity of the muscle-wasting community. Learn more about our 2022 winners.
Our annual President’s Awards, chaired by Muscular Dystrophy UK's President Gabby Logan, celebrate the strength and diversity of the muscle-wasting community. Learn more about our 2022 winners.

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Date Published:
23 February 2023

“The world’s not going to change and people aren’t going to be more aware unless you do something about it”

Charlotte and James Chubb, who set up The Chubb’s Crusade - Understanding Ullrich, win the Fundraiser of the Year President’s Award for their fantastic fundraising efforts.
Charlotte and James Chubb, who set up The Chubb’s Crusade - Understanding Ullrich, win the Fundraiser of the Year President’s Award for their fantastic fundraising efforts.

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Date Published:
23 February 2023

"My hope for the future is a society that doesn’t disable me anymore"

Gabby Logan presents Chloe Ball-Hopkins with the Richard Attenborough Award for Outstanding Achievement, as part of our President’s Awards, in recognition of her role as a passionate spokesperson. Here she shares some of her highs, lows, and proudest memories.
Gabby Logan presents Chloe Ball-Hopkins with the Richard Attenborough Award for Outstanding Achievement, as part of our President’s Awards, in recognition of her role as a passionate spokesperson. Here she shares some of her highs, lows, and proudest memories.

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Date Published:
23 February 2023

“I want to make the space my son will be entering for his additional needs a more diverse one”

A year into her role as Muscular Dystrophy UK’s Equality, Diversity and Inclusion Ambassador, we catch up with Tiffany Hesson about her personal commitment to championing diversity within the muscle-wasting community.
A year into her role as Muscular Dystrophy UK’s Equality, Diversity and Inclusion Ambassador, we catch up with Tiffany Hesson about her personal commitment to championing diversity within the muscle-wasting community.

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Date Published:
8 February 2023

“If you are constantly trying to cure sneezing, which is a symptom of a cold, then you won’t get very far” - my visit to Liverpool Universities

Muscular Dystrophy UK’s Research Communications Officer, Dr Andrea Gubas meets four of the researchers funded by the charity to learn more about their projects and what it’s like to work in a lab.
Muscular Dystrophy UK’s Research Communications Officer, Dr Andrea Gubas meets four of the researchers funded by the charity to learn more about their projects and what it’s like to work in a lab.

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Date Published:
31 January 2023

Researchers find potential key to treatment for myopathies in the pocket of an old muscle protein

A new research study has explored how a drug which regulates muscle contractions in the heart could pave the way to treatments for muscle-wasting conditions like MYH2 myopathy, nemaline myopathy, and certain congenital myopathies.
A new research study has explored how a drug which regulates muscle contractions in the heart could pave the way to treatments for muscle-wasting conditions like MYH2 myopathy, nemaline myopathy, and certain congenital myopathies.

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Date Published:
27 January 2023

New research sheds light on the cause of myotonic dystrophy type 1

Research findings from the University of St Andrews have linked myotonic dystrophy type 1 to an issue with the mechanism that controls stress response in cells in the body.
Research findings from the University of St Andrews have linked myotonic dystrophy type 1 to an issue with the mechanism that controls stress response in cells in the body.

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Date Published:
15 December 2022

New research may help predict the severity and progression of Duchenne muscular dystrophy

Researchers have made progress in understanding why the severity of Duchenne muscular dystrophy symptoms varies between boys, which could have major implications for clinical prognosis and future research into treatments.
Researchers have made progress in understanding why the severity of Duchenne muscular dystrophy symptoms varies between boys, which could have major implications for clinical prognosis and future research into treatments.

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Date Published:
30 November 2022

What do the latest government budget plans mean? – the Autumn statement explained

Understand how changes to disability benefits, energy bills, NHS funding and more will affect people living with muscular dystrophy.
Understand how changes to disability benefits, energy bills, NHS funding and more will affect people living with muscular dystrophy.

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Date Published:
28 November 2022

'My stepdaughter is my motivation and inspiration'

“I’ve known Sarah for the last 16 years, since she was 23, and have seen her go from being able to walk – although with some difficulty – to now using a wheelchair full-time.”
“I’ve known Sarah for the last 16 years, since she was 23, and have seen her go from being able to walk – although with some difficulty – to now using a wheelchair full-time.”

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Date Published:
3 November 2022

“The smile on his face at the summit said it all” - Father climbs Snowdon with son on his back to raise money for muscle-wasting charity

Tim Morris climbed the tallest mountain in Wales while carrying his eight-year-old son, Ruairi, on his back to raise money for Muscular Dystrophy UK. Ruairi isn’t able to climb Snowdon himself due to the nature of his progressive muscle-wasting condition, so Tim put in double the effort to reach the peak.
Tim Morris climbed the tallest mountain in Wales while carrying his eight-year-old son, Ruairi, on his back to raise money for Muscular Dystrophy UK. Ruairi isn’t able to climb Snowdon himself due to the nature of his progressive muscle-wasting condition, so Tim put in double the effort to reach the peak.

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Date Published:
12 October 2022

Fun, fireworks and a gruelling marathon to remember ‘incredibly inspiring’ younger brother

In memory of his younger brother, Mike Bladen-Blake is completing the London marathon after organising a celebration event with his family to fundraise for MDUK.
In memory of his younger brother, Mike Bladen-Blake is completing the London marathon after organising a celebration event with his family to fundraise for MDUK.

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Date Published:
28 September 2022

Runners of all backgrounds to turn Cambridge’s streets orange for the annual Town and Gown 10k

3,000 runners of all abilities and backgrounds will return to Cambridge’s streets for the annual Town and Gown 10k race in October.
3,000 runners of all abilities and backgrounds will return to Cambridge’s streets for the annual Town and Gown 10k race in October.

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Date Published:
23 September 2022

International Myotonic Dystrophy Awareness Day: MDUK project overview

This Myotonic Dystrophy Awareness Day, we explore the projects that MDUK is working on to better understand this condition, and hopefully find effective treatments and ultimately a cure.
This Myotonic Dystrophy Awareness Day, we explore the projects that MDUK is working on to better understand this condition, and hopefully find effective treatments and ultimately a cure.

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Date Published:
14 September 2022

Supporting girls and women with Duchenne muscular dystrophy – international recommendations

As part of Duchenne awareness day on 7 September, it is important to shift the focus to women and girls who are either carriers of Duchenne muscular dystrophy or live with the condition themselves.  
As part of Duchenne awareness day on 7 September, it is important to shift the focus to women and girls who are either carriers of Duchenne muscular dystrophy or live with the condition themselves.  

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Date Published:
6 September 2022

23 years in fundraising – how Muscular Dystrophy UK has changed over time

Charles Horton, Regional Development Manager for Wales, the South West, and West Midlands, retired in August after working with Muscular Dystrophy UK for over 23 years. We caught up with him to find out more about his memories at MDUK.
Charles Horton, Regional Development Manager for Wales, the South West, and West Midlands, retired in August after working with Muscular Dystrophy UK for over 23 years. We caught up with him to find out more about his memories at MDUK.

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Date Published:
5 September 2022