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. International requests will also be discussed with the TREAT-NMD Global Database Oversight Committee.


Dr Chiara Marini-Bettolo

The John Walton Muscular Dystrophy Research Centre, Newcastle

Chiara is Consultant Neurologist and Clinical Lead at the John Walton Muscular Dystrophy Research Centre and is an Honorary Clinical Lecturer at Newcastle University. Chiara is also the Principle Investigator of the UK FSHD Patient Registry.


Dr Tracey Willis

Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry

Tracey Willis is a Paediatric Neurologist with an interest in neuromuscular diseases. She completed her paediatric neurology training in Birmingham and since then has worked as a paediatric neurologist in Birmingham and Auckland, New Zealand. Between 2008 and 2012 she was the Muscular Dystrophy Campaign (MDC) fellow at the Institute of Human Genetics in Newcastle with Professor Straub and was involved in designing and setting up the Global FKRP registry for limb girdle muscular dystrophy 2I (LGMD2I), congenital muscular dystrophy (MDC1C) and other FKRP related disorders. Her work has also involved coordinating a multicentre MRI/MRS study in LGMD2I. Dr. Willis now works as the lead clinician at RJAH, Oswestry in the muscle service and is involved in the diagnosis and care of a broad spectrum of patients with neuromuscular diseases, including Pompe disease.


Dr Peter Lunt

National Genetics Education and Development Centre, Birmingham

Dr Peter Lunt has been actively involved with clinical and genetic research in FSHD since 1985-87, when he visited many UK families for gene mapping studies based in Cardiff.  He helped initiate the now annual International genetic research meetings in FSHD, and helped develop molecular testing for FSHD in Bristol within the UK Genetic Testing Network, for whom he was Clinical Advisor from 2006-9. Having worked as a Consultant Clinical Geneticist in Bristol from 1989-2012, he is now Senior Advisor in Genetics at the National Genetics Education and Development Centre in Birmingham.  


Andrew Graham

Muscular Dystrophy UK

Andrew has been involved with the Muscular Dystrophy UK for a number of years originally being  Vice President and in 2010 became a Board Trustee and Treasurer. In leading a fundraising initiative on FSH, recognised the importance of patient registries as part of the preparation for Clinical Trials.


Dr Fiona Norwood

King’s College Hospital, London

Dr Fiona Norwood is a Consultant Neurologist and Honorary Senior Lecturer at King’s College Hospital in London. She runs a twice-weekly muscle clinic with multidisciplinary support  from the regional muscle physiotherapist and patient advocate from the MDC. Her particular interest is in genetic muscle diseases including FSHD. Her research background is in biochemical studies of the dystrophin protein, work which she completed at Guy’s Hospital and the MRC Laboratory of Molecular Biology in Cambridge. She has worked and studied in several muscle centres in the UK and abroad and has been at King’s since 2005.


Dr. Richard Orrell

Institute of Neurology, University College 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.  He was particularly involved in genetic and clinical studies of Facioscapulohumeral Dystrophy following inspiration by Dr Berch Griggs, 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 Mark Roberts

Salford Royal Hospital, Manchester

Dr Mark Roberts is a Consultant Neurologist at the Greater Manchester Neurosciences Unit at Salford Royal NHS Foundation Trust.  He has clinical interests in neuromuscular disease,and has worked with TREAT-NMD on a number of rare disease registries. 


Suzanne Watt

Muscular Dystrophy UK

Suzanne  works closely with Muscular Dystrophy UK to support the work of the dedicated scientists in the UK and abroad searching for a cure for FSHD. Instrumental in the setup of the registry, she wants to see a cure in her children’s lifetime. 


Dr Emma Matthews

Atkinson Morely Regional Centre for Neurosciences, St George's Hospital, London

Emma is a consultant neurologist at the Atkinson Morley Regional Centre for Neurosciences, St George’s Hospital London in their neuromuscular team. A large part of her role is to establish a local transition service for young adults with neuromuscular disorders and to increase clinical trial capacity and readiness. Emma is also very interested in patient and public engagement and has worked as a neurologist for a number of years.


Robert Muni-Lofra

The John Walton Muscular Dystrophy Research Centre, Newcastle

Robert is a Consultant Neuromuscular Physiotherapist at the John Walton Muscular Dystrophy Research Centre. Robert is responsible for providing different aspects of the patient’s care and to assess disease progression whilst supporting the medical staff in the diagnosis of new patients.