Muscular Dystrophy UK praises collaboration between Coronation Street and The Lily Foundation
The ongoing storyline of a child with mitochondrial disease in Coronation Street is sensitively and accurately capturing the reality of the muscle-wasting condition. We provided advice to the producers back in 2016 on an earlier storyline about a muscle-wasting condition and are delighted with how this story has developed with the support of our colleagues
Lockdown research, by Professor Antonella Spinazzola
Professor Antonella Spinazzola, MD, reflects on her experience of research into Mitochondrial DNA Medicine during the pandemic. What we do Research in my laboratory focuses on the parts of the cells called mitochondria, which convert most of our food into a form of energy usable by the body. We study how mitochondria are made and function,
Art to Heart
Applying for financial support: Alex Gosney
New guidance on the safety of medicine use in people with mitochondrial myopathies
After an international study, The IMP has released updated guidance on the medicines that should be avoided or used with caution in people with primary mitochondrial disease. The IMP is a network of mitochondrial disease patient organisations which MDUK is part of. The study, carried out by specialists, researchers and clinicians, was published in
Highlights of the 2019 Neuromuscular Translational Research Conference
The 12th UK Neuromuscular Translational Research Conference was held in Newcastle on 4-5 April 2019. Jointly organised by MDUK and the MRC Centre for Neuromuscular Disease, the conference showcased recent developments in research and was attended by eminent international scientists. The conference included talks and posters on a range of neuromuscular conditions. We were delighted to
Have your say on research into mitochondrial disease
Despite growing research activity in the UK and across the globe, many questions about mitochondrial disease have not been answered. Funding is limited, so it’s essential that it’s directed to areas that are most important. The aim of the Mitochondrial Disease Priority Setting Partnership (PSP) is to find the most important unanswered questions about mitochondrial
PREFER is looking for volunteers living with myotonic dystrophy or mitochondrial disease
As part of the IMI PREFER project, we’re working with Newcastle University to conduct focus groups for people with myotonic dystrophy type 1 or mitochondrial disease, as well as their caregivers. We want to know what people with these conditions think about different treatments (real treatments and hypothetical ones) and what trade-offs they are willing to make. A
Nuclear Technologies company adopts Muscular Dystrophy UK as Charity of the Year for 2019
Workers at TÜV SÜD Nuclear Technologies. have decided to support Muscular Dystrophy UK throughout 2019 in a bid to help beat muscle-wasting conditions after hearing about the daughter of a work colleague who had been diagnosed with Megaconial Muscular Dystrophy. They got their 2019 year of fundraising off to a flying start when they presented
Mitochondrial myopathy trial recruiting in the UK
Update 25 April 2019: Enrollment for this trial is now complete. Top-line data is expected by the end of 2019. Stealth BioTherapeutics has initiated a phase 3 trial (MMPOWER-3) to test elamipretide in individuals with primary mitochondrial myopathy. Elamipretide is a drug that binds to cardiolipin – an important structural component in mitochondria. Animal studies
News
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UK Rare Diseases Framework
UK Rare Diseases Framework published
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Important announcement for adults with DMD
MDUK announces completion of two projects we funded into DMD.
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AMO Pharma announces AMO-02 clinical trial
AMO-Pharma announces the initiation of REACH-CDM clinical trial
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Join Gabby Logan's live cooking lesson
Gabby will cook her Sri Lankan-style monkfish curry.
Events calendar
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1
Go Bright for the fight 2021
1 February 2021
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14
Go Bright for the fight – Virtual Balloon Race
14 February 2021
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6
Snowdonia Velocity Zip Slide for Georges Journey
6 March 2021
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