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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.
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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Date Published:
11 April 2024

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.

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Date Published:
10 April 2024

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.
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.

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Date Published:
5 April 2024

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.
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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Date Published:
5 April 2024

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.
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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Date Published:
3 April 2024

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.
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.

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Date Published:
3 April 2024

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.
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.

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Date Published:
2 April 2024

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.

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Date Published:
27 March 2024

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.
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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Date Published:
27 March 2024

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.
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.

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Date Published:
25 March 2024
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