Duchenne Muscular Dystrophy Charity | Action Medical Research

Duchenne muscular dystrophy

Tom asks, "When will I be able to hop mummy?". It is not your usual question from a seven year old, but Tom has Duchenne muscular dystrophy, a rare and fatal degenerative disease for which there is no cure.

‘It is a 100% fatal condition. My world fell apart when I found out. My gorgeous son will eventually become locked in his body and he is likely to lose his life by his mid-twenties.’
Rebecca, Tom's mum

Action has recently funded research into Duchenne, which aimed to develop a new medicine that could increase muscle strength and slow down the progression of this relentless horrible disease.

We urgently need your help funding many more vital research projects including those tackling rare diseases. Please donate today.


Watch mum Rebecca and researcher Professor Volker Straub explain more about Tom and the research in this short video.

‘If we could just have something that could slow it down, slow its progression, so children can walk for a little bit longer, they can hug their parents for a little bit longer – that means everything.’

Rebecca, Tom's mum

Find out more about Duchenne Muscular Dystrophy and other rare diseases.

"Just the other day Tom asked me when he would learn to hop. It was tough. Do I tell him that his leg muscles were already too weak to hop or that he would master it one day?" Rebecca, Tom's mum

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Rare diseases like Duchenne together affect many thousands of children across the UK. Rare Disease Day on the 28 February aims to raise awareness of all rare diseases. Show your support with a donation today to Action Medical Research and help offer hope to these families by funding research which could lead to breakthroughs.

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