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US FDA advisory committee votes on Sarepta SRP-9001 gene therapy to treat Duchenne muscular dystrophy ahead of a FDA’s final decision
UPDATE: On 24 May 2023, Roche published an update in which they stated that the FDA's final…
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Your story
Anne and Trevor Peterson are stood with lots of medals on one arm each, with their other arm around each other. They are smiling.
Mother’s promise to dying son to continue making a difference
Anne shared her emotional story with thousands of people when she officially started this year’s…
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Your story
Louise is sat on a mobility scooter on the beach, smiling with her thumbs up. She's wearing a green puffer jacket and a woolly hat
"I wish I could dance on the outside too” – Inclusivity and advice for Mental Health Awareness Week 2023
‘Go running to combat anxiety!’ read the headline of an online article that appeared on my Facebook…
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Your story
Gemma and her family are sat a picnic table
Going the distance for muscular dystrophy research at the Great North Run 2023
I remember the first time I ran the Great North Run, back in 2021.   I was coming up to a bridge…
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Blog
Group of runners at the Oxford Town and Gown all running towards the camera
Meet the #TeamOrange runners going the distance at Bidwells Oxford Town & Gown 10k to help fight muscle-wasting conditions
We are excited to welcome the thousands of runners joining us at the historic Bidwells Oxford Town…
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Your story
The photo is taken inside a red car. Dean sits on the passenger side with his daughter Grace, an 18 year old blonde girl in the drivers seat. A Younger blonde girl, Millie, sits behind the driver.
“They encouraged us not to downplay the worst days”: Dad Dean reflects on helpline’s invaluable support
When we first learned that Esmae and Grace both had limb-girdle muscular dystrophy, we found the…
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Your story
2 image collage of Sara - on the left, she's wearing a green dress and in front of lots of trees. On the right, it's a selfie of Sara wearing a multi-colour floral shirt
“Sometimes, having the heating on is the only way I can stop my muscles hurting – so what happens when people like me can’t afford the energy bill?”
I have rigid spine syndrome muscular dystrophy (RSMD). My condition mostly affects my back, neck,…
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Your story
Jed Thirkettle is on holiday standing with his thumbs up
“We spend so much of our lives wishing we were in someone else’s shoes that we often forget to enjoy what we have right now”
Like most kids growing up in the UK, every year my classmates and I took part in the school sports…
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Blog
Image of an auditorium with a projection of a presentation that reads 'Welcome to the 16th UK Annual Neuromuscular Translational Research Conference 29th and 30th March 2023'
Recap from the 16th UK Neuromuscular Translational Research conference 2023
The conference took place in London on the 29 and 30 March 2023 and was officially opened by…
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Blog
Research lab image of labelled bottles
New findings may increase the speed of research into treatments for Duchenne muscular dystrophy
Future research into treatments for Duchenne Muscular Dystrophy (DMD) could be made faster and…
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