Blogs | Muscular Dystrophy UK

Coming together as a community: celebrating our recent Information Days

Over the past two months, following the success of our October 2023 Northern Ireland Information Day, we’ve held information days in Scotland, England and Wales. We look back at the great feedback and talks from our three most recent events.

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Chief Executive Catherine Woodhead to leave Muscular Dystrophy UK

Read more about Chief Executive Catherine Woodhead to leave Muscular Dystrophy UK

Our Chief Executive, Catherine Woodhead, has announced she will be leaving the charity this year. Catherine joined Muscular Dystrophy UK in 2016 as Director of Development and became Chief Executive in 2018.

Under Catherine’s leadership, Muscular Dystrophy UK has invested more in research, laid the foundations for potential new treatments, secured NHS investment in specialist neuromuscular services, and supported more people across the UK. We’re extremely grateful to Catherine for her dedication and vision, which has ensured we are in a strong position as we look to the future.

New research centre will unlock tests and treatments for people living with rare mitochondrial diseases

Read more about New research centre will unlock tests and treatments for people living with rare mitochondrial diseases

We’re delighted to announce, thanks to our partnership with LifeArc and the Lily Foundation, the establishment of a new research centre, giving hope to thousands of people living with rare mitochondrial diseases.

We’ve been awarded a quality mark for our health and care information

Read more about We’ve been awarded a quality mark for our health and care information

We’ve been awarded the PIF TICK – the UK’s only assessed quality mark for print and online health and care information.

Meet our RHS Chelsea Flower Show garden designer: Ula Maria

We sat down with our talented RHS Chelsea Flower Show garden designer, Ula Maria, to find out more about her story. She discusses her background in landscape design, how she became our designer, and where she got her inspiration for our the Muscular Dystrophy UK- Forest Bathing Garden.

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Adventure is out there: Martin's accessible outdoor spaces

It’s well documented that being outdoors is good for our mental and physical wellbeing. But making the most of nature isn’t always straightforward if you’re a wheelchair user. Self-confessed outdoor adventurer, Martin Hywood was diagnosed with limb girdle muscular dystrophy in 1996 and loves exploring the great outdoors. Here, he shares some of his favourite outdoor spaces across the UK – all fully accessible.

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Charcot-Marie Tooth runs in my family so I’m running the London marathon

West end musical theatre performer Jordan Cunningham is running the London marathon for his father and nephews with Charcot-Marie Tooth (CMT). As a self-confessed novice runner, Jordan talks about how watching his partner complete the marathon last year convinced him to sign up, his training routine, and why this challenge is important to him.

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Designing funky products for the disabled community

As a manifesting carrier of Becker muscular dystrophy, Michelle has used her experience of living with a disability to start making gadgets and tools to help the disabled community. She discusses being a design student at university, the products she’s created so far, and her future career plans.

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Good luck to all our London Marathon runners

On Sunday, 21 April 2024, 180 runners will don the MDUK colours and join the 50,000 entrants at the iconic TCS London Marathon. We caught up with some of #TeamMDUK to find out why they decided to take on the 26.2-mile challenge for us and how they’re feeling about the big day.

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We’ve been awarded funds to support researchers in the early stages of their careers

Read more about We’ve been awarded funds to support researchers in the early stages of their careers

Earlier this year, the Government announced a further £45million to support charity-funded early-career researchers, adding to the £70million provided in the previous three years. Overall, the scheme will support over 1,000 early-career researchers across the UK.

We’re excited to announce that we’ve been awarded part of the Medical Research Charities Early-Career Researcher Fund, which will help fund seven researchers in early stages of their careers. These include PhD students and postdoctoral fellows, and researchers who are working towards an independent research career.

Accessing sexual healthcare as a disabled woman: Lauren and Rebecca’s story

Lauren and Rebecca are both young women who have muscular dystrophy and are full time wheelchair users. For World Health Day, they share their experiences of accessing reproductive and sexual healthcare, reflect on prejudices they’ve faced and what they feel needs to change.

Read more about Accessing sexual healthcare as a disabled woman: Lauren and Rebecca’s story

The Continuing Healthcare process needs to be appropriate to progressive degenerative conditions

A lot of people living with a muscle wasting and weakening condition are dependent on Continuing Healthcare (CHC) − care provided by health and social care professionals to meet their physical or mental health needs. In many cases CHC allows people to live independently. To receive this support an initial needs assessment is carried out which is followed by annual reviews. Ben and his mother share their experience of these annual reviews, the mental stress and anxiety of the process and their concern that at any time this care package could change or be taken away.

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I’ve never run before, but I’m doing it in memory of my brother

Thomas Dewar is running the Great Manchester Run half marathon on Sunday 26 May in memory of his younger brother, William, who lived with Duchenne muscular dystrophy and died suddenly on 1 July 2023, aged 22.

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Group take on Yorkshire Three Peaks in memory of school friend

On Saturday 20 April, nine friends are taking on the Yorkshire Three Peaks in memory of their school friend, Simon Mirfin, who lived with Facioscapulohumeral muscular dystrophy (FSHD) and died on 27 September 2023, aged 46. One of Simon’s friends, Mukesh Patel, explains why they’re taking on the challenge.

Read more about Group take on Yorkshire Three Peaks in memory of school friend

Best friends take on Glasgow Kiltwalk Challenge for 10-month-old Miley

On Sunday 28 April, best friends Katie Rollo and Amy Stevens are taking on the ultimate Kiltwalk challenge – walking 22.6 miles from Glasgow Green to Loch Lomond – in support of Katie’s daughter, Miley, who lives with Ullrich congenital muscular dystrophy.

Read more about Best friends take on Glasgow Kiltwalk Challenge for 10-month-old Miley

NICE publishes draft guidance on vamorolone for treating Duchenne muscular dystrophy

Read more about NICE publishes draft guidance on vamorolone for treating Duchenne muscular dystrophy

The National Institute for Health and Care Excellence (NICE) has published draft guidance that vamorolone, a potential alternative to existing corticosteroids, is not recommended, within its marketing authorisation, for treating Duchenne muscular dystrophy in people four years and over.

Gardening advice from Ula Maria: Our Forest Bathing RHS Chelsea Flower Show garden designer

Our talented Chelsea Flower Show Forest Bathing garden designer Ula Maria shares her top tips and advice for all things horticulture, from how to make a small garden feel bigger to making your garden into a wellbeing space.

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Helping us understand congenital myopathies: a new study of changes to an important muscle protein is providing insights

Some congenital myopathies and other muscle conditions are caused by changes in the gene that makes a protein called RyR1. In people living with these conditions, different types of changes, known as modifications, have been found on a protein involved in muscle contraction, called myosin. This research, partly funded by Muscular Dystrophy UK, may help to understand RyR1-related muscle wasting conditions and could lead to the development of new treatments.

Read more about Helping us understand congenital myopathies: a new study of changes to an important muscle protein is providing insights

Approval of Duvyzat (givinostat) for Duchenne muscular dystrophy in the USA

On Thursday, 21 March 2024, the oral drug for the treatment of Duchenne muscular dystrophy (DMD), Duvyzat (also known as givinostat), was approved by the FDA (U.S. Food and Drug Administration) for use in boys aged 6 and older in the United States. Duvyzat is the first non-steroidal drug approved to treat people with all genetic variations of DMD.

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ADHD and muscular dystrophy means your brain and body are constantly fighting each other

Six-year-old Rory has Beckers muscular dystrophy and is neurodivergent. This Neurodiversity awareness week, Rory’s mum Kerry opens up about why having ADHD creates extra challenges with a muscle wasting condition. We also hear about the need for more research into the link between some muscular dystrophies and neurodivergence.

Read more about ADHD and muscular dystrophy means your brain and body are constantly fighting each other

Our President, Gabby Logan running her first half marathon in 20 years

Sports anchor, podcaster and author, Gabby Logan MBE last ran a half marathon two decades ago, but on Sunday 7 April, she is taking on the London Landmarks Half Marathon in support of Muscular Dystrophy UK. Gabby has been our President since 2018 and has shown her support in various ways, including hosting events and helping to raise awareness of muscular dystrophy, but this will be her first running challenge for us. She has been inspired by watching others taking on challenges.

Read more about Our President, Gabby Logan running her first half marathon in 20 years

MDA clinical and scientific conference 2024: Andrea’s update

Muscular Dystrophy Association (MDA) conference took place in Orlando, Florida between 2 and 6 March 2024. Our Research Communications Officer shares her thoughts and the latest developments in the research field of muscular dystrophy.

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The role of periostin in Duchenne muscular dystrophy

The research work of Professor Linda Popplewell and Dr Alberto Malerba reveals high levels of periostin − a protein involved in the formation of scar tissue − in mice with Duchenne muscular dystrophy (DMD). These findings could potentially have a big effect on the development of targeted therapies for people living with DMD.

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Debbie's RHS Chelsea Flower Show Update

Debbie Hoods, Head of Philanthropy and Partnerships at the charity, is leading the work on our garden at the RHS Chelsea Flower Show. Here she explains more about the garden and how preparations are going.

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What are the key takeaways from the Government’s Spring Budget?

On Wednesday 6 March, the Chancellor of the Exchequer Rt Hon Jeremy Hunt MP delivered the Spring Budget, which provides an update on the Government’s economic plans. As this may be the last time the Chancellor makes a budget announcement before the next general election, the measures outlined will likely set the direction the UK Government will take during 2024.

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Overview of our successful Care Advisors Conference 2024

This year we held our flagship upskilling conference in Birmingham, welcoming 47 Neuromuscular Care Advisors and Clinical Nurse Specialists from across the UK.

Read more about Overview of our successful Care Advisors Conference 2024

This year we held our flagship upskilling conference in Birmingham, welcoming 47 Neuromuscular Care Advisors and Clinical Nurse Specialists from across the UK.

Making music and DJing with Duchenne muscular dystrophy

Sanjeev − aka Supermann on da beat − is a Scottish music producer, promotor and activist who has Duchenne muscular dystrophy. Having worked with artists from all over the world, he spreads awareness about making the music scene more accessible, and how others with disabilities can follow their creative passions.

Read more about Making music and DJing with Duchenne muscular dystrophy

Supporting our community’s mental health with Louise Halling

Counsellor, Louise Halling, is attending our England Information Day to meet members of the therapeutic groups she runs with us in person. As a mum with limb girdle muscular dystrophy and over 15 years of experience as a counsellor, she discusses the importance of mental health support for our community.

Read more about Supporting our community’s mental health with Louise Halling

Taking on Mount Kilimanjaro in grandma’s memory

Michael took on the challenge of climbing Kilimanjaro in memory of his grandma who had muscular dystrophy. He tells us about why he chose this incredible trek, shares details of his climb, and provides top tips for others braving the world’s tallest free-standing mountain.

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Turning a diagnosis into a purpose: John Foxwell

Retired headteacher, John Foxwell, has made huge strides in raising awareness of Pompe disease following his diagnosis six years ago. He tells us about how life has changed for the better since his diagnosis, and all he’s done for the Pompe community.

Read more about Turning a diagnosis into a purpose: John Foxwell

Recognising scientist Linda Popplewell on International Day of Women and Girls in Science

In recognition of the International Day of Women and Girls in Science, we caught up with Professor Linda Popplewell. She works at the National Horizons Centre, Teesside University, developing therapies for rare diseases. Professor Popplewell spoke to us about her research for people with muscular dystrophy, why she chose a career in science, and the importance of celebrating female scientists.

Read more about Recognising scientist Linda Popplewell on International Day of Women and Girls in Science

Research: Successful use of a self-management support programme in neuromuscular specialist centres

We funded research to look at whether a particular self-management support programme called Neuromuscular Bridges, developed to help people with muscle wasting conditions, could successfully be used in neuromuscular specialist centres. The programme focuses on building patients' confidence and includes special training for healthcare professionals.

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Your heart-warming words of wisdom on growing up with a muscle wasting condition

At the beginning of this Disability History Month, Jack and Lauren shared a blog about what you said about your experiences of Physical Education in school − following a survey they carried out on growing up with muscular dystrophy. They also reflected on their own experiences. As we continue to mark Disability History Month, Jack shares the helpful advice you had to give others growing up with a muscle wasting condition.

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What are the key takeaways from the Government’s Autumn Statement?

Read more about What are the key takeaways from the Government’s Autumn Statement?

Last week, Wednesday 22 November, the Chancellor of the Exchequer Rt Hon Jeremy Hunt MP, delivered the Autumn Statement which provides an update on the government’s economic plans. With an upcoming general election anticipated in the new year we were eagerly anticipating the government’s announcements to understand the direction they would set for 2024.

Disability History Month: your school experiences of Physical Education

For this UK Disability History Month, Muscular Dystrophy UK Employability Officer and EDI Co-Chair Jack and Helpline, Information, and Advocacy Officer Lauren carried out a survey of our community, focusing on this year’s theme of childhood and youth. Here they share what you told us about your experiences of school physical education (PE) while growing up with a muscle wasting or weakening condition and how this reflects on their own personal experiences.

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Reflection on the Annual Report

As we launch our 2022/2023 Impact Report, our Chief Executive Catherine Woodhead reflects on the accomplishments, successes and significant milestones we've achieved together over the last year.

Read more about Reflection on the Annual Report

As we launch our 2022/2023 Impact Report, our Chief Executive Catherine Woodhead reflects on the accomplishments, successes and significant milestones we've achieved together over the last year.

Skin cells' potential to form muscle cell models

A new research study has tested the ability of skin cells to form muscle in the lab. This will help researchers to decide what kinds of cells to use when investigating muscle conditions.

Read more about Skin cells' potential to form muscle cell models

A new research study has tested the ability of skin cells to form muscle in the lab. This will help researchers to decide what kinds of cells to use when investigating muscle conditions.

Meet our Trustee: Brigid Sutcliffe

Brigid has been a member of our Finance Committee since February 2022, and a Trustee since October 2022. An experienced non-executive director and chartered accountant, Brigid has worked in professional services, banking and as a strategic change management consultant. Her experience of muscle wasting and weakening conditions comes from caring for her husband and two of her adult children who have myotonic dystrophy type DM1. Here she shares her experience of being a Trustee.

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Writing for wellbeing: how it works for me by Trish

Trish cares for her two sons, aged 28 and 29, who both live with Duchenne muscular dystrophy. Over the past ten years, she’s discovered creative writing helps her deal with, celebrate, and remember the highs and lows of everyday life. Since recently publishing a collection of poems, Trish tells us about why she writes for her well-being.

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Courageous Carmela is On A Roll

Nine-year-old fundraiser Carmela Chillery-Watson is making headlines once again, having inspired a second children’s book, signed up to catwalk The Bristol Fashion Show and won two awards in the space of a few months.

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Update on the 28th annual World Muscle Society 2023 Congress

Our research communications officer, Dr Andrea Gubas, recently attended the 28th Annual World Muscle Society (WMS) Congress in Charleston, South Carolina.

Read more about Update on the 28th annual World Muscle Society 2023 Congress

Our research communications officer, Dr Andrea Gubas, recently attended the 28th Annual World Muscle Society (WMS) Congress in Charleston, South Carolina.

Northern Ireland Information Day – connecting our community

On Thursday 5 October we successfully hosted an in-person information day for adults living with muscle wasting and weakening conditions in Northern Ireland.

Read more about Northern Ireland Information Day – connecting our community

On Thursday 5 October we successfully hosted an in-person information day for adults living with muscle wasting and weakening conditions in Northern Ireland.

“The help from Muscular Dystrophy UK has ensured I can live day to day” – Jamie’s helpline story

Jamie lives with Charcot Marie Tooth disease (CMT). He got in touch with our helpline when he was looking for support with his condition. He talks about his experiences at school, work and navigating the Personal Independence Payment (PiP) process. PiP payments are extra everyday benefits that help you with the financial costs of living with a disability.

Read more about “The help from Muscular Dystrophy UK has ensured I can live day to day” – Jamie’s helpline story

Proud mother to start Town and Gown race in son’s memory

Read more about Proud mother to start Town and Gown race in son’s memory

On Sunday 15 October Angela, with her husband Brian, will officially start Bidwells Cambridge Town and Gown race in memory of their ‘inspirational’ son Jonathan. Jonathan lived with Duchenne muscular dystrophy for nearly 30 years. A Cambridge university PhD student and award winning academic and supporter of the charity, appearing in the BBC’s Lifeline appeal, he wanted to be remembered for his ‘ability not his disability’. 

Baking a Difference for my Dad

For baking enthusiast Charlotte, organising a Bake a Difference event was the perfect way to fundraise. It also gave her the chance to talk to her friends and family about the impact of her own dad’s muscle wasting condition, and the importance of raising funds for future research.  

Read more about Baking a Difference for my Dad

Celebrating our first ever accessible golf day

Last month, we teamed up with The Golf Trust at The Shire, London, to host our first ever accessible golf day. With the support of coaches, there was an opportunity for everyone to get involved and try out adapted equipment in an accessible and inclusive environment. Hear from the individuals and families who joined us on the day.

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Meet our Great North Run #TeamMDUK runners

This Sunday 10 September 2023, around 100 runners will be representing us, wearing our orange vest and taking on the Great North Run in support of people living with muscle wasting conditions. Ahead of the big day, we caught up with some of the team to find out why they’re taking on the challenge and what they’re looking forward to most.

Read more about Meet our Great North Run #TeamMDUK runners

SMA Health Inequality Survey

We’ve built a strong partnership with Spinal Muscular Atrophy UK over recent years, collaborating to secure access to SMA treatments and working together as co-secretariat of the UK SMA Newborn Screening Alliance. Our latest piece of joint work sees us coming together to work with Roche Pharmaceuticals on a project exploring health inequalities faced by people affected by SMA in England. Please note, Roche Pharmaceuticals have funded this project through an independent agency and are partnering with SMA UK and MDUK to capture this data. Roche has no access to this data but have had editorial input into the questions in the survey.

Read more about SMA Health Inequality Survey

Research discovers new insights into the potential cause of Facioscapulohumeral Muscular Dystrophy

Read more about Research discovers new insights into the potential cause of Facioscapulohumeral Muscular Dystrophy

New research carried out by MDUK-funded researchers has led to the discovery of a potential cause of facioscapulohumeral muscular dystrophy (FSHD).

Highlighting our campaign for newborn screening as part of SMA Awareness Month

As part of Spinal muscular atrophy (SMA) Awareness Month, we’re sharing our latest updates on our campaign for the condition to be included in the national newborn screening programme.

Read more about Highlighting our campaign for newborn screening as part of SMA Awareness Month

As part of Spinal muscular atrophy (SMA) Awareness Month, we’re sharing our latest updates on our campaign for the condition to be included in the national newborn screening programme.

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