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The Group is very fortunate to have recourse to a panel of Medical Advisers on whom we can call for advice in the various clinical and research fields which involve the condition of Myotonic Dystrophy. Their help is invaluable. The following list is not necessarily comprehensive, but shows some of those professionals whose past and present guidance is gratefully acknowledged.
Professor of Human Molecular Genetics, University of Nottingham. Prior to this appointment, Prof. Brook had a Post doctoral research position in Massachusetts USA, and Cardiff. He came to Nottingham in 1992 as Senior Lecturer in Molecular Genetics. David was instrumental in isolating the gene that causes Myotonic Dystrophy. David is Patron of MDSG.
Dr Ian Bowler who has family connections with Myotonic Dystrophy, has been involved with the Support Group since its founding, being Vice Chair for several years. His work at the Cardiff and Vale NHS Trust, includes giving anaesthetics, back pain relief and responsibilities in the intensive care unit. Ian is actively involved in teaching, research and charitable work.
Professor Sir Peter Harper was a University Research Professor (Emeritus) in Human Genetics at Cardiff University until 2004. He was Professor of Medical Genetics at the University of Wales College of Medicine, where he was responsible for developing research in neurogenetics, notably on Huntington’s disease and Myotonic Dystrophy. He also helped to develop the Wales Medical Genetics Service and has been a member of the UK Human Genetics Commission and Advisory Committee on genetic testing, being involved with a range of policy documents including genetic testing for late onset disorders, cancer genetics services and genetics services for neurological disorders. Sir Peter was the first Patron of MDSG.
Medical training at Cambridge, London and Glasgow. Trained in Neurology at Oxford. One year at Montreal Neurological Institute. Consultant Neurologist, Radcliffe Infirmary, Oxford. Consultant in General Neurology, Milton Keynes. Clinical Director of Oxford Muscle and Nerve Centre, (MDC)
Prof Darren Monckton is a Professor of Human Genetics at the Institute of Biomedical and Life Sciences, University of Glasgow. Darren’s work involves research into Myotonic Dystrophy.
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 Rogers first trained as a GP, before studying Genetics at Cardiff. His work in the muscle clinic has given him opportunities to research data, by applying protocol in the routine management of patients, where the emphasis is always on the clinical needs of the patient.
Dr D Wilcox has a long-standing interest in improving care in neuromuscular disorders, and has played a part in developing the Scottish Muscle Network – now used as a model for services elsewhere in the UK. He initiated the development of the Myotonic Dystrophy Care Card which has been taken up by patients across the world. He believes that patients and their advocates, such as MDSG,should have a direct say in how health services develop.
Dr. Moxley is Professor of Neurology and Pediatrics, Division of Medicine, at the University of Rochester in Rochester, New York and Director of the Wellstone Muscular Dystrophy Center. After graduating from Harvard and the University of Pennsylvania Medical School, he completed his internship in Pennsylvania and then a Heart Disease and Stroke Control Program at NASA Headquarters. His residency was in Neurology at Harvard Medical Center and his fellowship in Medicine at Johns Hopkins University. He completed a Postdoctoral NIH special fellowship in Endocrinology and Metabolism at Johns Hopkins. In addition to the directorship of the muscular dystrophy center, he is Associate Chairman of the Department of Neurology at Strong Memorial Hospital, and formerly Director of EMG/Nerve Conduction Laboratory at Strong Memorial Hospital. With support from the NIH he initiated the National Registry for DM and FSHD (facioscapulohumoral dystrophy, another form of muscular dystrophy), a tool investigators can use to incorporate affected DM family members into their research. He has published numerous articles on myotonic dystrophy in professional journals and serves on many advisory boards and committees. Dr. Moxley has carried out an investigation of Mexiletine, a medication that relaxes myotonia, or muscle stiffness; and is currently conducting a clinical trial of SomatoKine in individuals with myotonic dystrophy. For further information on Dr. Moxley, visit the URMC website.
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