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7th Annual Action Duchenne Conference 2009
This page contains information and resources from the Action Duchenne Conference 2009
Carl Tilson interviews Steve Shrewsbury and Ellen Welch
Carl Tilson a young person living with Duchenne interviews Medical research officer Steve Shrewsbury from AVI Biopharma and Dr Ellen Welch from PTC Therapeutics. Carl asks all the questions we want the answer to!
Stuart Wickison interview
Stuart is a young person living with Duchenne Muscular Dystrophy and at the conference in 2009 gave his views on research and living with Duchenne. Stuart ha taken part in Action Duchenne's Genius project and was one of the photographers in this years photography exhibition.
Professor Steve Wilton interview
Professor Wilton is from the University of Western Australia and has developed many of the novel sequences of antisense oligonucleotides for exon skipping in Duchenne.
Dr Steve Shrewsbury interview
Dr Shrewsbury is the chief medical officer for AVI Biopharma in the USA and in partnership with the MDEX consortium in the UK is currently running clinical trials with their morphlino based exon skipping drugs.
Professor Kate Bushby interview
Professor Kate Bushby leads the clinical centre for Duchenne in Newcastle and has set up the Treat NMD EU project that is setting up resources to overcome hurdles in translational research and best clinical practice.
Interview with Eric Hoffman
Professor Eric Hoffman from Washington USA worked in 1986 with Louis Kunkel and team to clone the sequence of the dystophin gene. This was a vital step forward in our ability to be able to develop some of today's drug breakthroughs. Eric is now the head of the Synergy network for Duchenne an international research partnership.
Advancing Cameseal to clinical validation in heart failure
Dr Les Browne from Phrixus Pharmaceuticals presents on the companies drug Cameseal.
Exon Skipping gene therapy for Duchenne
Dr Tita Ritsema from AMT Biopharma in the Netherlands discusses her companies new development of a novel compound for exon skipping in Duchenne.
Ataluren Clinical Trials and the PTC Catalyst drug programme
Dr Ellen Welch from PTC Therapeutics in the USA updates the conference on the clinical trials for Ataluren and the companies drug development programme for Duchenne.
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The Role of an Endocrinologist
Professor Mehul Dattani from Great Ormond Street Hospital in London discusses the important role that endocrinologists can play in the assessment and monitoring of steroids and their effects on the endocrine system in children with Duchenne.
Accident and Emergency Care
Professor Kate Bushby from University of Newcastle has developed with Action Duchenne an Accident and Emergency Care file. You can be sent a free copy by registering with our website and clicking the link on your dashboard.
Managing the Heart
Dr John Bourke from University of Newcastle and how to manage the common problem of cardiomyopathy found in young people with Duchenne.
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Respiratory Care for Duchenne
Dr Nick Hart from the Fox Lane Unit in London and the very important need to ensure that young people living with Duchenne have access to expert respiratory management.
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Do's and Dont's with Physiotherapy
Dr Michelle Eagle from University of Newcastle gives important advice on physiotherapy and physical management of Duchenne.
Learning and Behaviour Problems in Duchenne
Dr James Poysky from Baylor College of Medicine in Texas USA describes the problems that some boys living with Duchenne can have with learning and behaviour. James also suggests strategies for helping at home and school
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Talking with your children about Duchenne
Dr David Schonfeld from Cincinnati Children's Hospital has given an excellent introduction into ways of discussing very difficult topics relating to Duchenne with your children.
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Influencing Clinical Trial Design
Dr Pauline McCormack from University of Newcastle looks at how patients and families can be more proactively involved in clinical trial design
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International Care Standards
Professor Kate Bushby Newcastle Centre for Life discusses the Diagnosis and Management of Duchenne and the launch of internationally agreed standards of care for Duchenne. These have now been published in the Lancet.
How do we make sense of what we hear - TACT Drug development prioritisation pipeline
Professor Dominic Wells from Imperial College London discusses a new project that will prioritise new drug development programmes for Duchenne.
Conference Photos
