Come with your family or come on your own to Muscular Dystrophy UK’s 2017 National Conference in Birmingham. You’ll meet others living with muscle-wasting conditions and enjoy a day filled with practical advice and information to improve your quality of life. You’ll hear from scientists and healthcare professionals, as well as Powerchair footballers and those who love to travel. And Sue Barker OBE, our President, will be there to hand out the coveted President’s Awards.
Conference speakers – more to follow
This workshop, led by Professor Darren Monckton, Professor of Human Genetics at the University of Glasgow, relates to all muscle-wasting conditions. Prof Monckton will focus on the scientific process that starts with defining a condition and ends with clinical trials and getting new treatments approved. He’ll also talk about how patients, families and advocacy groups can help in this journey. With recent technological advances, and important developments in our understanding of how to translate lab breakthroughs into new drugs, he believes we’ll see a growing number of clinical trials in the years ahead. Many of these won’t be successful, but there is a growing prospect of some new treatments – ones that could fundamentally alter the course of some muscle-wasting conditions – being developed.
In this workshop, Professor Jenny Morgan, Professor of Cell Biology at University College London, will give an overview of what stem cells are and how they could be manipulated to enhance muscle repair. She will also discuss the current state of stem cell research and the challenges that need to be overcome before a stem cell therapy could be tested in people with muscle-wasting conditions.
In this workshop, Professor Nic Wells, Professor of Translational Medicine at Royal Veterinary College, will give an overview of potential therapies that could be applied to a range of muscle-wasting conditions and summarise recent progress in these areas. Therapies for Duchenne and spinal muscular atrophy have recently been approved in Europe and the USA and Prof Wells believes this sets a precedent for the approval of future drugs for other muscle-wasting conditions.
Sam Bull, National Development Manager, Wheelchair Football Association (WFA)
“Over the past 12 years, powerchair football has change my life! It started when I found a version of football that I could play! I remember my first goal, and will never forget the feeling of captaining England’s powerchair team. After playing, I started coaching and now I work as the WFA National Development Manager. Over the years, the game has changed, but what never changes is the look on people’s faces when the play for the first time or score their first goal. Join this workshop to find out more about this amazing sport, and how Muscular Dystrophy UK and the WFA are working to introduce it to more people.
Dr Sadie Thomas-Unsworth is a highly specialist clinical psychologist at Bristol Royal Hospital for Children, working with children and their families affected by life-threatening illness. Since completing her training on the Bristol Doctoral Programme in Clinical Psychology in 2010, she has specialised in this area of work and has developed a specific interest in supporting children and families living with muscle-wasting conditions. In 2016, Sadie led on the development and piloting of Hear my voice, a new workshop programme for young people with muscle-wasting conditions.
Marina di Marco is the Principal Neuromuscular Physiotherapist, based in the Queen Elizabeth University Hospital in Glasgow. Marina works with both children and adults with muscle-wasting conditions, and leads the neuromuscular physiotherapy service in Glasgow and the West of Scotland. She is also the Lead Clinician for the Scottish Muscle Network, supporting research and education and has been in this post for four years.
Demelza Stuart is MDUK’s Advocacy and Information Officer in Northern Ireland, helping people with muscle-wasting conditions get the care and support they are entitled to. As a qualified Occupational Therapist (OT), Demelza supports families and individuals across the UK on issues such as housing, equipment or adaptations, and liaises with relevant community and health trust OTs.
“I’m Mitch, I’m 25 and I have Duchenne muscular dystrophy. I live in Bristol with my partner and young daughter. I studied Graphic Design at Uni and I’m now enjoying being a Dad. I’m part of the Content Advisory Group for Muscular Dystrophy UK and a keen supporter of the charity. I do a bit of writing and I have my own blog too.” Read more about Mitch’s experience in his blog.
“My name is Jon Powton, i’m 43 years old, I was diagnosed with Becker when at 17. I trained as an engineer but have also worked in everything from a fish stall on a market to a nuclear power station, with many stops along the way, even a spell as a property developer. Now I work in child protection, and have spent the last seven years as a foster carer with my wife. I love what I do, and want to tell you so much more about it, and hopefully inspire more people to do it.” Read more about Jon’s experience in his blog.
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