Steering Committee

About the Steering Committee

The committee is responsible for reviewing all requests for data from the registry. This is intended to be a streamlined and rapid procedure in order not to delay approval. Requests will be discussed with the TREAT-NMD Global Database Oversight Committee.



Mrs Margaret Bowler

Myotonic Dystrophy Support Group (MDSG)

Margaret Bowler is the founder member of the Myotonic Dystrophy Support Group started in the UK in 1989 following the diagnosis of her husband, Keith and 12 year old son, Peter. Since then 2000+ families have joined MDSG,


Prof Darren Monckton

Institute of Molecular Cell and Systems Biology, University of Glasgow, Glasgow

Darren Monckton is Professor of Human Genetics and Director of the University of Glasgow’s Wellcome Trust four-year PhD programme. His research group is investigating the basis of genetic instability in disorders such as Myotonic Dystrophy and Huntington disease, with the aim of providing improved diagnostics, treatments and cures. He has published numerous scientific papers and book chapters, and has presented his research in many invited seminars and lectures and is also a Scientific Advisor to the Myotonic Dystrophy Support Group (UK) and the Myotonic Dystrophy Foundation (USA).


Dr Richard Orrell

Department of Clinical Neuroscience, Institute of Neurology, University College London, London

Dr Richard Orrell is Senior Lecturer in Clinical Neuroscience at the Institute of Neurology, University College London. He is a Consultant Neurologist at the Royal Free Hospital London, the National Hospital for Neurology and Neurosurgery, and also sees patients at the QE2 Hospital, Welwyn Garden City.

Dr Orrell has a longstanding clinical and research interest in muscle disorders. His inspirations for myotonic dystrophy have come from many myologists and geneticists, especially Dr Russell Lane and Professor Keith Johnson at Imperial College London and Dr Berch Griggs, Dr Richard Moxley III, and Dr Charles Thornton, at the University of Rochester Medical Centre, New York, USA, where he spent one year as a Visiting Professor, supported by the Medical Research Council Travelling Fellowship Programme.


Dr Chris Turner

National Hospital for Neurology and Neurosurgery, London

Chris Turner has been working as a consultant at the MRC Centre for Neuromuscular Disease, Queen Square and UCLH since 2007. He has a specialist interest in muscle disease and runs a twice monthly Myotonic Dystrophy clinic at Queen Square.


Dr Mark Rogers

Institute of Medical Genetics, University Hospital of Wales, Cardiff

Mark Rogers is a Consultant Clinical Geneticist and the Clinical Lead in Neuromuscular Genetics at the University Hospital of Wales in Cardiff. He qualified in 1984 at St Thomas’ Hospital, London and then initially trained as a GP. Always interested in genetics, he changed directions to train in Clinical Genetics at the University Hospital of Wales, Cardiff including one year as a fellow at the Murdoch Institute, Melbourne, Australia. Since 1995 he has been part of the Cardiff Clinical Genetics team providing adult neuromuscular disease management, for which he is now Clinical Lead. Dr Rogers has published articles and book chapters on Myotonic Dystrophy and is an advisor to the Myotonic Dystrophy Support Group.


Dr Margaret Phillips

Division of Rehabilitation Medicine, Royal Derby Hospital, Derby

Dr Margaret Phillips worked for 3 years in the Institute of Medical Genetics, Cardiff, studying Myotonic Dystrophy. Her skills and experience include seventeen years of working with people with Myotonic Dystrophy, being a consultant and Associate Professor in Rehabilitation Medicine, a trustee and medical advisor for the MDSG and Lead Clinician for Rehabilitation Medicine at Derby Hospitals Foundation Trust.


Dr Mark Roberts

Consultant Neurologist, Salford Royal NHS Foundation Trust


Dr Michael Rose

King's College London, London


Jacqueline Donachie

Patient Family Representative and Award Winning Artist, Glasgow


Dr Chiara Marini-Bettolo

The John Walton Muscular Dystrophy Research Centre, Newcastle


Dafydd Williams

Patient Family Representative, Cardiff