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.


Chiara Marini-BettoloDr Chiara Marini-Bettolo

Principal Investigator

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.


Richard OrrellDr. Richard Orrell

Steering Committee Chair

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 Fiona NorwoodFiona Norwood

Steering Committee Vice Chair

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.


Kate AdcockKate Adcock

Muscular Dystrophy UK

Kate became Director of Research and Innovation Muscular Dystrophy UK in 2018. She works with Trustees, clinicians, researchers and – most importantly – MDUK’s supporters to deliver research that is meaningful to patients living with neuromuscular conditions. There are over 110,000 adults and children living with over 60 different types of neuromuscular conditions the UK. These are rare and very-rare conditions many of which have no treatment, although several advanced therapies are coming through the pipeline for a number of them.

Kate has over 15 years’ experience of research funding and strategy through senior roles at the Medical Research Council, Wellcome Trust and latterly, MDUK. Kate has a PhD in Neuroscience from the University of Cambridge. She worked as a post-doctoral assistant at the University of Basel and in the Department of Diagnostic Imaging at the University Children’s Hospital in Zurich before taking up a post at Wellcome in 2005.


Andrew GrahamAndrew 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.


Mark MenciasMark Mencias 

The Atkinson Morley Neuromuscular Centre, St George's Hospital, London

Mark is clinical nurse specialist who set-up a nurse-led neurogenetics clinic based in Atkinson Morley Regional Neuroscience Centre in St George’s Hospital. This is a project funded through the South East Genomic Medicine Service Alliance with an aim to improve the diagnosis and health outcomes of patients with rare genetic neurological diseases particularly those with neuromuscular disorders such as FSHD. The nurse-led service works with the multidisciplinary team and the link between neurology, clinical genetics and research. Mark has a research background in drug development in rare and ultrarare diseases.


Emma MatthewsDr Emma Matthews

The Atkinson Morley Neuromuscular Centre, St George's Hospital, London

Emma is a Consultant Neurologist and Reader of Neurology at the Atkinson Morley Neuromuscular Centre, St George’s Hospital London. She runs twice weekly neuromuscular clinics including a transition service for young adults with neuromuscular disorders. These are supported by a neuromuscular physiotherapist and regional care advisors. Emma has a research background in genetic neuromuscular disorders and in clinical trials for rare diseases. She is a member of FSHD UK and the European FSHD clinical trial readiness network working to increase clinical trial capacity and readiness. She is also very interested in patient and public engagement and has helped to establish a local FSHD patient group at St George’s.


Robert Muni-LofraRobert 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.


Dr Mark RobertsMark 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 on a number of rare disease registries. 



Dr Tracey WillisTracy 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.