Our Steering Committee
Prof. Michela Guglieri
PRINCIPAL INVESTIGATOR, BMD HUB
Professor Guglieri is a Senior Clinical Lecturer and Neuromuscular Consultant at Newcastle University.
She leads the clinical research team which is currently involved in over 30 studies over the past 5 years.
Kate Adcock
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. Kate sits on the Executive Committee of the European Neuromuscular Centre (ENMC).
Kate has almost 20 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.
Dr Maria Elena Farrugia
Dr Farrugia graduated in Medicine and Surgery from University of Malta in 1995. She then moved to the UK in 1997 where she first undertook training in postgraduate medicine, then specialist training in Neurology in Aberdeen Royal Infirmary, Aberdeen, Ninewells Hospital, Dundee and at the Institute of Neurological Sciences in Glasgow.
She trained in neuromuscular disorders at the Muscle & Nerve centre in Oxford (from 2002 -2004) under the supervision of the late Professor John Newsom-Davis, and Professor Angela Vincent and Dr David Hilton Jones. She graduated in DPhil (University of Oxford) in 2005. The research work undertaken during the DPhil was based on the clinical (including neurophysiological and radiological) features of MuSK antibody positive myasthenia gravis and laboratory-based characteristics of MuSK antibody positive serum.
She took up a Consultant Neurologist post at the Queen Elizabeth University Hospital Glasgow in 2007. Dr Farrugia set up the myasthenia gravis service for the West of Scotland in 2007 and has been a lead clinician for myasthenia gravis since 2007 and for adult muscle disorders since 2015.
Suzanne Glover
Suzanne Glover is the Research Officer for Pathfinders. She lives in a small town in Northern Ireland with her husband, Colin and their Greyhound, Edith.
Suzanne completed her PhD in March 2021 which looked at resilience in those who care for someone with Duchenne Muscular Dystrophy.
Her current project in Pathfinders is researching transition to adulthood for young men with DMD.
Suzanne enjoys getting out and about with Colin and Edith for walks, particularly around National Trust properties. She is also a massive fan of tea drinking!
Emma Heslop
Emma Heslop is the DMD Hub Manager and leads the Networking Strand within the JWMDRC.
She has been part of the John Walton Muscular Dystrophy Research Centre at Newcastle University since October 2006, when she joined the TREAT-NMD Neuromuscular network of excellence.
David Hick
Diagnosed with Becker Muscular Dystrophy in 2023 at 34 years old. Following my diagnosis, I left a 15 year career in the motor trade to pursue music and art full time.
Now a singer songwriter, known as David & The Devil (formerly Charley Hicks) I have recorded 4 Albums and 7 Singles which have all gone on to top the ITunes Blues Charts, recorded music for film and TV and performed in multiple countries.
Over time I noticed a huge change to my physical abilities which became impossible to hide or ignore, ultimately leading to my diagnosis.
I am currently on a clinical trial, keen to support the development of new treatments and passionate about raising awareness of Muscular Dystrophy.
Prof. Ros Quinlivan
Ros Quinlivan obtained a BSc in psychology before going onto to study medicine at UCL. She has been a consultant in Neuromuscular Diseases since 1995, originally in the West Midlands and subsequently at the National Hospital for Neurology and Neurosurgery.
She was awarded an MD by the University of London for her research into the cardiomyopathy of Duchenne and Becker Muscular Dystrophy. She was director of the Wolfson Centre For Inherited Neuromuscular Disease until she moved back to London in 2010, where she leads the transition service for adolescents and young adults with neuromuscular disease.
She established and leads the Neuromuscular Complex Care Centre and is clinical lead for the nationally commissioned service for McArdle disease and related disorders. In the past, she was joint co-ordinating editor for the Cochrane Neuromuscular Disease Group and was chair of the British Myology Society.
Emily Reuben, OBE
After her eldest son was diagnosed with Duchenne muscular dystrophy (DMD), Emily established the Duchenne Children’s Trust. The charity joined forces with Joining Jack and is now Duchenne UK. Since 2012 they have spent more than £17 million on accelerating the search for treatments and a cure for DMD, and have set up groundbreaking and award-winning collaborations, turning Duchenne UK into the UK’s largest funder of DMD research.
Emily has advocated on behalf of patients around the world in meetings at the Food and Drug Administration (FDA), European Medicines Agency (EMA), Medicines and Healthcare products Regulatory Agency (MHRA), National Institute for Health and Care Excellence (NICE) and Scottish Medicines Consortium (SMC). She was praised in the House of Commons for the charity’s work by the then Minister for Life Sciences, and in 2017 Emily and her co-founder Alex Johnson were awarded a Points of Light award by the Prime Minister for their passionate work.
Emily is a former member of the Association of the British Pharmaceutical Industry’s (ABPI) eight-person Patient Advisory Council, and sits on the Steering Group for the ABPI’s Patient Organisation Forum. She is also a member of the MHRA’s Patient Group Consultative Forum, as well as the Steering Group for the regulator’s new Innovative Licensing and Access Pathway (ILAP).
Dr Pietro Riguzzi
Dr Riguzzi is a neurologist and PhD student in Clinical and Translational Neurosciences at the University of Padova.
He has recently joined the muscle team at the John Walton Muscle Dystrophy Research Centre as a PhD fellow and Clinical Research Associate.
He is deeply interested in dystrophinopathies and aims to make significant contributions to this field.
Prof. Tracey Willis
Professor Willis is a paediatric neurologist, specialising in neuromuscular conditions.
She is the clinical lead in Neuromuscular disorders at Robert Jones and Agnes Hunt orthopaedic hospital and Birmingham children’s hospital and Visiting Professor (awarded 2018) for Chester and Shrewsbury University, contributing to the master’s courses particularly in medical genetics.
She is chair of the UK Muscle Interest group and West Midlands Neuromuscular Network and is a board member for the BMS and BPNA.
Professor Willis is an active contributor to the Northstar and SMA REACH databases, leading on the palliative care aspect of standards of care and developed an e-learning tool for palliative care for physicians on Neuromuscular conditions and a chapter in a recent book on neuromuscular emergencies. She is on the steering committee for the FSHD registry and founder member for FSHD UK.
