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Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

Posted on: July 26th, 2017 | 3 comments

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function in the canine model (dogs). Golden Labradors are naturally affected by Duchenne muscular dystrophy so researchers chose them for mammalian trials, ahead of tests in humans. The new pre-clinical research carried out by researchers at the Royal Holloway in London and French

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First draft of agenda announced – Action Duchenne International Conference

Posted on: June 28th, 2017 | 0 comments

We are extremely excited to announce the first draft of the agenda for the Action Duchenne International Conference 2017. The agenda is liable to change but gives a good picture of the breadth and depth of content at the event. The conference will take place Friday 10 to Sunday 12 November 2017 at the Hilton

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The Deebles – Family Story

Posted on: October 17th, 2017 | 0 comments

In October 2016, our then 2.5 year old son Sebastian had a blood test which revealed a very high CK level. After months of concerns about his gross motor skill development and a previous paediatrician reassuring us that he was simply a “late developer”, it was from that blood test that we were told he

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The Ker-Lindsay’s – Family Story

Posted on: October 17th, 2017 | 0 comments

John Ker-Lindsay was disgnosed with Duchenne at 4, hear from his parents about their journey and hope for the future Our son, John, was diagnosed with Duchenne Muscular Dystrophy in October 2014, soon after his fourth birthday. John’s diagnosis process Almost from the day he was born, we knew that there was something ‘wrong’. It

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National Voices – Brexit Health Alliance

Posted on: October 17th, 2017 | 0 comments

National Voices is part of the Brexit Health Alliance. The Brexit Health Alliance was established to make sure that the interests of those who use health services – as well as healthcare commissioners, providers and researchers – are reflected in the Brexit negotiations. This week, the Alliance is running a week-long campaign to raise awareness of

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Sarepta presents their SKIP-NMD poster at World Muscle Society

Posted on: October 13th, 2017 | 0 comments

Sarepta have presented their SKIP-NMD project poster at the World Muscle Society meeting. Click here to view the poster Action Duchenne provided an educational grant to the SKIP-NMD project and played a prominent role, along with our other Duchenne patient organisation partners, on the project’s ethics committee. Diana Ribeiro, Action Duchenne CEO: “We have been

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Muscle Help Foundation Rugby Muscle Dream open for nominations

Posted on: October 11th, 2017 | 0 comments

Know someone with muscular dystrophy that loves rugby? You can now nominate them to take part in the Muscle Help Foundation charity’s 2017 Rugby Muscle Dream Programme supported once again by the London Marriott Hotel Twickenham and the RFU – bring it on! Rugby Muscle Dream Programme OLD MUTUAL WEALTH SERIES 2017: ENGLAND V AUSTRALIA Fri 17th

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Have your say at the Action Duchenne AGM while you are at the Conference 2017

Posted on: October 11th, 2017 | 0 comments

We greatly appreciate the support and energy we receive from our community and hope to make it as easy as possible for you to share your thoughts. To enable as many people as possible to have a say, again this year we will be hosting our AGM at the conference. We welcome your input. The meeting will

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Capricor present positive results at World Muscle Society

Posted on: October 4th, 2017 | 0 comments

Capricor presented at the 22nd Annual International Congress of the World Muscle Society, and reported that teens and young men in the advanced stages of Duchenne muscular dystrophy experienced meaningful improvements in cardiac and upper limb function after a single dose of Capricor’s lead investigational product, CAP-1002. The late breaking abstract and results presented at the

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Santhera to present data and hold symposium on respiratory function decline at WMS

Posted on: October 4th, 2017 | 0 comments

Santhera will present additional data from the positive Phase III DELOS trial in patients with Duchenne muscular dystrophy at the 22nd International Congress of the World Muscle Society (WMS) in Saint Malo, France. “We are pleased to have the opportunity to showcase our research and to further facilitate discussion surrounding respiratory function decline in DMD patients

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Summit highlights Duchenne biomarker validation data at WMS meeting

Posted on: October 4th, 2017 | 0 comments

It has been announced that a series of presentations will be given by Summit and its collaborators at the 22nd International Congress of the World Muscle Society, which is taking place in Saint-Malo, France, from 3-7 October 2017. The presentations include validation data of muscle biopsy biomarkers designed to assess utrophin modulator activity in clinical trials

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Update on the application for marketing authorization for Raxone

Posted on: October 4th, 2017 | 0 comments

Action Duchenne are active members of United Parent Project and we are pleased to share an update and Q&A details from Santhera regarding the application for marketing authorization for Raxone. Letter to UPPMD from Santhera

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Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

Tell me more

First draft of agenda announced – Action Duchenne International Conference

June 28th, 2017

We are extremely excited to announce the first draft of the agenda for the Action

Tell me more

Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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