Members

How to join

The group comprises study investigators (PIs), including neurologists, palliative care specialists and other professionals with a particular interest in MND clinical research. PPI members of the group represent patients and those affected by the disease. We welcome new members to the UK Motor Neuron Disease Clinical Studies Group. Email info.ukmndcsg@gmail.com to find out more.

Membership

Members are invited to attend monthly videoconferences and an annual face-to-face event. All members are regularly informed about current research activity and performance, funding opportunities and new research projects (industry and non-commercial) that they can become involved in.

You can find out more about our group members by clicking on each member's profile.

Professor Christopher McDermott (Chair)

Professor of Translational Neurology, SITraN, University of Sheffield
Consultant Neurologist, Sheffield Teaching Hospitals Foundation NHS Trust

Professor McDermott studied for his medical degree at the University of Leeds, graduating in 1994. He then continued his general medical and specialist neurology training in Leeds before taking up a clinical research training fellowship at the University of Newcastle upon Tyne. He moved to the University of Sheffield with Professor Dame Pamela Shaw in 2000 to undertake his Wellcome Trust Research Training PhD Fellowship and to complete his Specialist Training in Neurology to become a Consultant Neurologist in 2006.

Professor McDermott is now the Professor of Translational Neurology at SITraN and a Consultant Neurologist at the Sheffield Teaching Hospitals Foundation NHS Trust regularly undertaking specialist MND and neuromuscular clinics in Sheffield.

The main drive of Professor McDermott's research programme is developing the evidence base for delivering supportive and symptomatic care for patients living with motor neuron disease. He is also interested in studying mechanisms of neurodegeneration, in order to develop and evaluate treatments for patients with motor neuron disease.

Read more about Professor McDermott in the 'Meet the researcher' blog

Professor Carolyn Young (Deputy Chair)

Consultant Neurologist, Walton Centre NHS Foundation Trust, Liverpool

Professor Young has a specialist interest in disabling neurological disorders, and is on both the UK Specialist Register for Neurology and the European Board of Physical Medicine and Rehabilitation. Since appointment as a consultant in 1992 at the Walton Centre NHS Foundation Trust, she has founded services in multiple sclerosis and motor neurone disease (MND).

She has been sole consultant for the MND service since its inception in 1992 and Care Centre director since 1999, when the Care Centre network was set up in the UK.  She has been principal investigator for over 80 trials and published over 130 papers in MND, multiple sclerosis, brain injury and rehabilitation.  She was on the NICE Technology Assessment Committee for several years and has also contributed to NICE as an expert for the guidelines on riluzole and NIV in MND, as well as four multiple sclerosis drug assessments.  Committed to evidence based medicine guidance, she is an editor for both Cochrane Neuromuscular Disease Group, and Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System.

Stacy Young (Coordinator)

UK MND Speciality Coordinator, UK MND Clinical Studies Group

Clinical Research Manager, SITraN, University of Sheffield

Stacy received a first-class honours degree in biomedical sciences from Sheffield Hallam University, where she completed an integral 12-month industrial placement with the Physiology and Ergonomics team at the Defence Science and Technology Laboratory (Dstl). Following this introduction to working on volunteer studies, Stacy has gone on to work in a variety of clinical research environments for over 18 years.  She has accumulated a broad range of skills and experience during this time, including managing a research facility, carrying out volunteer testing and coordinating extensive research programmes, including investigator-led clinical trials and multicentre, national and international research projects. 

Stacy is now based at SITraN in Sheffield and has two elements to her role.  She is the Clinical Research Manager for MND studies at SITraN, where she provides expertise, guidance and support to investigators and research staff on all areas relating to clinical research governance. Stacy is also the national MND Speciality Coordinator for the UK MND Clinical Studies Group (UK MND CSG), supporting the development and delivery of the national portfolio of MND healthcare research studies.

Professor Ammar Al-Chalabi

Consultant Neurologist, King's College London

Professor Al-Chalabi is an MND Association funded researcher and Professor of Neurology and Complex Disease at King’s College London.  He is also the Director of the MND Care and Research Centre at King’s College London.  His research interests are Mendelian and complex disease genetics and epidemiology in neurological diseases mainly MND.

Dr Idris Baker

Palliative Medicine Consultant, Swansea

Dr Idris Baker grew up in Knighton and Bangor and trained mainly in Cambridge, London and Leicester. He has interests in the theoretical and applied ethics of end of life care which he has studied at Keele University. Before taking up his post in Swansea he was visiting scholar at the Hastings Center in New York, looking at questions of autonomy and proxy decision making.

He currently has responsibilities in medical management, postgraduate training and education, and clinical ethics, but although he has read a couple of books he has learnt most of what he knows at patients' bedsides. He teaches and speaks widely on palliative care and ethics on undergraduate and postgraduate courses as well as with other groups.

Dr Andrew Barritt

Consultant Neurologist, Royal Sussex County Hospital, Brighton

Dr Barritt was trained at Guy's, King's and St Thomas' School of Medicine. He first undertook research into corticospinal tract injury with Professor Elizabeth Bradbury during an intercalated Neuroscience BSc in 2004 and graduated with his primary medical degree in 2007.

He completed higher specialist training in Neurology at Hurstwood Park Neurological Centre within Brighton and Sussex University Hospitals NHS Trust and at the National Hospital for Neurology and Neurosurgery in Queen Square. He also graduated from the University of Brighton in 2020 having completed his PhD investigating how detailed magnetic resonance neuroimaging techniques might shed light on the mechanisms of neurodegeneration in amyotrophic lateral sclerosis.

He was recently appointed as a Consultant Neurologist at the Royal Sussex County Hospital, Brighton, is co-director of the Sussex MND Care and Research Network and continues his imaging research in ALS within the Brighton and Sussex Medical School.

Dr Caroline Barry

Consultant in Palliative Medicine, Norfolk and Norwich University Hospital

Dr Caroline Barry is a consultant in palliative medicine based at the Norfolk and Norwich University Hospital (NNUHFT). She has a particular interest in neurodegenerative conditions and since 2018 has been co-director of the Norfolk MND Care and Research Network.  She is a core member of the neurology core reference group for the European Association of Palliative Care and also holds the role of Honorary Clinical Associate Professor in Clinical and Translational Medicine; a joint appointment between NNUHFT and the University of East Anglia.   Alongside improvements in the symptom management and supportive care for people living with MND, her research interests also include service re-design and innovative commissioning; honed through a number of clinical leadership roles in the NHS and third sector, most recently as speciality advisor in palliative care to Norfolk and Waveney Integrated Care Board.

Dr James Bashford

Clinical Lecturer in Neurology, King’s College London

Dr James Bashford graduated from Cambridge University Medical School in 2010. After commencing his neurology training in 2014, he undertook a PhD in Clinical Neuroscience between 2015-2019. This focused on the detection of fasciculations in patients with MND using a new technique, known as high-density surface electromyography. A major output from this work was a novel analytical tool called the Surface Potential Quantification Engine (SPiQE). 

He is currently a Clinical Lecturer in Neurology at King’s College London, caring for patients within the King’s College Hospital Motor Nerve Clinic. His research focuses on motor nerve pathophysiology during neurodegeneration, exploring how the increased accessibility and versatility of noninvasive monitoring can expand our understanding of MND.

Dr Amina Chaouch

Consultant Neurologist, Salford Royal Foundation Trust

I completed my general medical training at Nottingham University before moving to Oxford, Birmingham and Manchester to finalise my neurology training. To help satisfy my creative side, I joined the John Walton Muscular Dystrophy Research Centre at Newcastle and completed my PhD in 2014.  Working closely with world class researchers, I was able to gain priceless experience in next generation sequencing and biomarker discovery.  Alongside other collaborators, I was fortunate to contribute to several high impact original papers and present at national and international meetings.  I qualified as a consultant in 2014 and been part of Manchester MND care centre since 2017.  I am the principal investigator and sub-investigator for different clinical trials. I have recently been awarded research funding to develop a more robust translational research platform for the MND service and have a particular interest in biotechnology, bio-banking and deep phenotyping.  I also hold the position of honorary senior lecturer with Manchester University through my regular teaching commitments.  In my spare time, I love walking and swimming.  I am also involved in different charity schemes both locally and internationally.

Dr Suresh Kumar Chhetri

Consultant Neurologist, Lancashire Teaching Hospitals NHS Foundation Trust

Dr Chhetri is leads the multidisciplinary team at Preston MND Care and Research Centre. He graduated from Tribhuvan University, Nepal and was a recipient of the Albert Einstein German Academic Refugee Initiative Fund (DAFI) scholarship. He undertook general medical training in Yorkshire and Manchester and completed neurology training from the Greater Manchester Neurosciences Centre, developing special interest in motor neuron disease and related disorders.

He has an interest in research and medical education and has completed postgraduate certificate in medical education from the University of Manchester and is a Fellow of the Higher Education Academy. He is an Honorary Lecturer and undergraduate academic advisor at the University of Manchester. He is also the Royal College of physicians (RCP) College Tutor at Royal Preston Hospital.

Dr Nick Cole

Head of Research, Motor Neurone Disease Association (MNDA)

Dr Nick Cole has been with the Motor Neurone Disease Association for two years. Previously, Nick was an academic research scientist, having run research groups at the Macquarie University Motor Neurone Disease Research Centre and the School of Medicine in the University of Sydney, Australia.

Prior to running his own MND research labs, Nick was a postdoctoral researcher at the Victor Chang Cardiac Research Institute in Sydney, The Wellcome Trust Centre at Dundee University and the School of Biology at the University of St Andrews, Scotland. Nick gained his PhD from the University of St Andrews and honours degree from the University of Liverpool.

Nick lives in Devon with his wife Genevieve and their three children and dog called Vegemite. Nick is a passionate and enthusiastic member of the MND Association who is driven to understand and communicate global MND research progress. Outside work, Nick is a keen kite surfer and in 2015 broke the Guinness World Record for the longest kite surf Journey, while raising money for MND research.

Dr Richard Davenport

Consultant Neurologist, Western General Hospital and Royal Infirmary of Edinburgh

Qualifications: DM, FRCP Edin, BM BS(Hons), B Med Sci

I qualified from Nottingham in 1987, completed general medical training in Stoke-on-Trent, moved to Edinburgh in 1992, and after my DM thesis in stroke spent a year in Australia, before returning to the Royal Infirmary of Edinburgh as one of the last Senior Registrars. Whilst very much a general neurologist, I undertake first seizure, movement disorder and MND clinics.

Dr Helen Devine

Consultant Neurologist, Newcastle

Brian Dickie

Director of Research Development, Motor Neurone Disease Association (MNDA)

Brian Dickie graduated in 1991 with a PhD in neuropharmacology from the University of Wales College of Medicine. He then took up a research fellowship in the Department of Pharmacology, University of Oxford, where his research on the mechanisms of cell death in Parkinson's disease was combined with medical teaching at Lincoln College, Oxford.

He has worked for the UK Motor Neurone Disease Association as Director of Research Development for 20 years. His roles include

Nicola Drewry

Patient representative

I have been diagnosed with MND since March 2016 and I am receiving professional assistance and care. I feel that I would like to take a more active, even proactive role in assisting the MNDA in whatever way I am able. MND has fallen upon me like a 'bolt out of the blue' and I am somewhat familiar with the symptoms and sufferings of those similarly diagnosed.

I want to see this terrible disease conquered and vanquished – and I know that I am not alone in this optimism. With many other diseases there is frequently hope and maybe some possible treatment.

With MND I want people to know there is a spark of hope for the future.

Tris Dyson

Patient representative

I have been diagnosed with MND since April 2023. My partner and I have a good life with a bouncy one year old daughter, a batty dog and our first home. This ‘news’ is gutting. The diagnosis comes with a great sense of inevitability and powerlessness that is experienced by all patients and families.

The inevitability is in retreat. There is great progress being made by a small, brilliant and underfunded cohort of researchers in turning this damn thing from terminal to chronic. I believe there is hope and I intended to be a constructive voice for patient involvement and empowerment in the emerging science.

Dr John Ealing

Consultant Neurologist, Salford Royal NHS Foundation Trust

Dr Ealing’s early neurological experience was in London gaining his MRCP(UK) in 1996. Appointed to the post of Wellcome Research Training Fellow at the University of Oxford, he successfully submitted his doctorate thesis, before moving to the north-west in 2001 to continue his neurological training at Preston, and then Manchester.

He was delighted to be appointed Consultant Neurologist at the Greater Manchester Neurosciences Centre based at Salford Royal in October 2005.

Although experienced in the full range of neurological conditions, his specialist work at Hope Hospital is in motor neurone disease, neurofibromatosis and neurogenetics. He has fostered strong links with allied specialists in Neuroradiology, Neurosurgery and Neurorehabilitation as well as an active role in clinical research and undergraduate education in his role as a Lecturer at the University of Manchester.

Dr Christina Faull

Consultant in Palliative Medicine, Leicestershire and Rutland Hospice (LOROS) and the University Hospitals of Leicester

BmedSci, MB BS, FRCP.,M.D. Dip Clin Hyp, PGCert Med Ed.

Since 2003 Christina has been a Consultant in Palliative Medicine at LOROS, the Leicestershire and Rutland Hospice and the University Hospitals of Leicester.  In 2013 she was awarded an honorary Chair at De Montfort University.

Christina is the LOROS hospice lead for research. Her recent research has focussed on the experiences of professionals and family in withdrawing ventilation at the request of a patient with MND.  The findings from which are translated into National Guidance published by the Association for Palliative Medicine of Great Britain and Ireland and available at http://apmonline.org/publications/.

Christina is a clinician, educator and researcher and is widely published.  Her two books (Handbook of Palliative Care and Palliative Care) were both awarded the BMA medical book of the year.

Dr Clare Galtrey

Consultant Neurologist, St George's University Hospitals NHS Foundation Trust

Dr Clare Galtrey trained at the University of Cambridge and was also part of the University's MB PhD programme, working at the Cambridge Centre for Brain Repair leading to the award of a PhD in 2006 in central nervous system plasticity after peripheral nerve injury.

She completed her postgraduate medical training and neurology training Kings College Hospital, Addenbrookes Hospital and St George's Hospital combined with postdoctoral research at the Institute of Psychiatry at Kings College London where she studied motor neurone disease phenotypes and pathology and also in the Sanger Centre in Cambridge studying molecular interactions involved synaptic function in health and disease.

Dr Galtrey now works as a consultant neurologist at St George's Hospital in London where she is a member of the MND service, which provides care to MND patients from South West London and Surrey. She also runs the adult spinal muscular atrophy service and contributes to the regional neurology service at St George's Hospital.

Dr George Gorrie

Consultant Neurologist, Institute of Neurosciences, Glasgow

I have a particular interest in motor neurone disease (MND). I lead the MND neurological service in Glasgow. I have a basic science (MA medical sciences, Cambridge; PhD cell biology, University College London and postdoctoral fellowship at Northwestern University, Chicago) and clinical background MBChB Edinburgh, FRCP (Glasgow). I continue to be actively involved in research on the care, treatment and cause of MND/ALS. I am also a serving trustee of MND Scotland.

Jane Haley

Director of Research, MND Scotland

Jane Haley is the Director of Research at MND Scotland. She has a background in neuroscience, having undertaken a BSc (Hons) and PhD at University College London. She then undertook postdoctoral positions at University of Minnesota, Stanford University, UCL and University of Edinburgh undertaking research that focussed on understanding synaptic plasticity and degeneration. 

After 19 years undertaking research, Jane then spent 15 years running Edinburgh Neuroscience at the University of Edinburgh, a role that involved enhancing the research environment for researchers working on a wide range of conditions that spanned the entire life-course. She joined MND Scotland in late 2021.

Dr Hisham Hamdalla

Consultant Neurologist, Salford Royal Foundation Trust

Dr Hisham is also an Honorary Clinical Lecturer at the University of Manchester. Qualifications include:

Dr Oliver Hanemann

Director, Institute of Translational and Stratified Medicine, PU Peninsula Medical School
Honorary Neurology Consultant, Plymouth Hospital NHS Trust

I trained at Medical School in Hamburg, Glasgow, Johns Hopkins and Harvard.  After a DFG research fellowship in molecular neurobiology I was neurology registrar at Medical School in Düsseldorf.  From 2000 I was consultant incl. clinical outpatient lead and senior lecturer at the medical school in Ulm continuing my work on brain tumours and motor neuropathies.  During that time, I was also trained as a medical geneticist. In 2005 I became chair of clinical neurobiology at the Peninsula medical school establishing clinical neurobiology research at PU PSMD.  I work as a neurology consultant and my own research at PU PSMD focusses on low grade brain tumours and clinical trials for motor neuron disease.

Since 2014 I have lead the centre of excellence on low grade brain tumours funded by Brain Tumour Research. Our centre has built up a low grade glioma collection and works close to the clinic.

Dr Thomas Lambert

Consultant Neurologist, University Hospitals North Midlands

I have worked as a Consultant Neurologist at University Hospitals North Midlands (Stoke and Stafford) since 2017, having trained as a registrar in the West Midlands rotation. I see patients as part of the North Midlands MND Care and Research Network including in an MDT clinic. I also have an interest in dementia/cognitive neurology and work in a joint clinic with old age psychiatry who run our local memory clinics.

Prior to medical training which I undertook in Birmingham (well supported and encouraged to pursue interest in Neurology by Prof Karen Morrison), I had studied Natural Sciences (Zoology) in Cambridge, a PhD in behavioural neurobiology in Bristol and post-doc work in molecular neuroscience at the University of Hohenheim in Stuttgart, Germany.

Jessica Lee

Director of Research, My Name'5 Doddie Foundation

My Name’5 Doddie Foundation is a UK medical research charity funding translational MND research from lab studies to clinical trials. Jess is responsible for the Foundation’s research programme, overseeing its investments into MND research. Prior to joining the Foundation, Jess worked in a number of research management and innovation roles, most recently leading the Syndicate programme at the Medicines Discovery Catapult where she set up national programmes between charities, academics, clinicians and industry to accelerate patient-focused medicines discovery.

Emma Lord

Business Manager, LifeArc

Emma is a Business Manager in the Partnerships Team at LifeArc supporting their MND portfolio of work. LifeArc is a self-financing medical research charity with a focus on early-stage translation, aiming to transform promising life science ideas into medical breakthroughs. Emma has a BSc (Hons) in biological sciences from The University of York and a PhD in ophthalmic genetics from the University of Leeds. Prior to joining LifeArc, Emma worked in research management roles at Imperial College London, Imperial’s NIHR Biomedical Research Centre and in the Genomic Medicine Service at NHS England. Emma’s roles to date have focused on the delivery of translational research for patient benefit, supporting clinical and non-clinical academics to plan and apply for grants, secure funding and manage outputs.

Dr Andrea Malaspina

Consultant Neurologist, National Hospital for Neurology and Neurosurgery (UCLH NHS Foundation Trust)

Dr Andrea Malaspina is a Reader in Clinical Neurology and Consultant Neurologist with research interests in neuromuscular and motor cell disorders.  He is the Co-Director of  the National Hospital London MND Care Centre.  His research focus is the identification and characterisation in accessible tissues and bio-fluids of biological signals whose expression, composition and conformation reflect the risk of developing a neurodegenerative pathology, predict its rate of progression and response to treatment.  This multimodal approach is applied to motor neurone disease to unravel the biological mechanisms behind onset and propagation of this neurodegenerative process. He has established and developed large biobanking projects for neurodegenerative disorders and for MND, including the ALS Biomarkers Study and A Multicentre Biomarker Resource Strategy in ALS (AMBRoSIA), combining longitudinal collection and novel concepts for storage and biochemical assay optimisation. 

Dr Tom Massey

Clinical Academic Neurologist, Cardiff University

Dr Massey is specialty lead for clinical research into MND and other forms of neurodegeneration in Wales, and is focussed on expanding access to clinical trials. He has research interests in repeat expansion disorders, particularly Huntington's disease.

Prior to studying Medicine as a graduate at the University of Oxford, Dr Massey trained in Natural Sciences (Biochemistry) at the University of Cambridge and was awarded a D.Phil in molecular mechanisms of DNA repair and recombination by the University of Oxford.

Dr Andria Merrison

Director of the Bristol MND Centre

Dr Andria Merrison is the Director of the Bristol MND Centre.  The Bristol MND Centre was established, in collaboration with the Motor Neurone Disease Association, in 2010 and provides services for people living with Motor Neurone Disease in the North half of the South West.  The centre has particularly developed multi-disciplinary integrated home ventilation services and psychological support for those it serves.

Dr Andria Merrison is also the Director of the South West Neuromuscular Operational Delivery Network (SWNMODN), providing services for people living with other Neuromuscular conditions throughout the South West.  This network is the first Neuromuscular ODN in the UK and in 2016 was awarded national Network of Excellence status by Muscular Dystrophy UK.

Dr Andria Merrison trained in Cambridge and Bristol before undertaking Specialist training in Neurology and Intensive Care Medicine in the South West.  She went on to further sub-specialist training in Oxford and London. She was awarded an MD for her research into the potential of human bone marrow stem cells for muscle repair.


Professor Karen Morrison

Clinical Director of MND Care Centre, Belfast 

Professor Karen Morrison is Dean of Education in the Faculty of Medicine, Health and Life Sciences, and Professor of Neurology at Queen’s University Belfast, with leadership responsibility for education within the 4 Schools of the Faculty, in addition to representing MHLS Educational activity at senior university level.  Her ethos in leading Education is to ensure that the Faculty graduates have the maximum opportunity to be equipped with the clinical, academic and professional skills to ensure successful careers across the wide spectrum of health and life sciences.

 

She has been a research active clinic academic for decades, with internationally recognised research expertise in genetic and clinical aspects of neurodegenerative disease, with specific focus on motor neurone disease, MND/amyotrophic lateral sclerosis, ALS, and Parkinson’s disease. 

 

Karen graduated in Medicine from the University of Cambridge (1983, BA; 1986, MA) and University of Oxford (1986, BMBCh). Following postdoctoral research at Yale University USA, she returned to Oxford and completed a DPhil in molecular genetic studies of Spinal Muscular Atrophy in the laboratory of Professor Kay Davies, funded by the MRC. She subsequently established her own research group to study MND/ALS supported by the Wellcome Trust, alongside completing clinical training in Neurology.  From 1999 – 2017 she was the Bloomer Professor of Neurology at the University of Birmingham, combining research into molecular genetic mechanisms in neurodegenerative disease with teaching and clinical work as co-lead of the Birmingham MND Care and Research Centre, with extensive experience in developing and running clinical trials in MND.

 

She continues her clinical work in Neurology in Belfast as a Consultant Neurologist in the Belfast Health and Social Care Trust.

Dr Ian Morrison

Consultant Neurologist, Ninewells Hospital, Edinburgh

Dr Morrison is a Consultant Neurologist at Ninewells Hospital and an Honorary Senior Lecturer at the University of Edinburgh.  He is Clinical Lead for motor neuron disease in NHS Tayside and collaborates within Scotland and across the UK on research in this area.

He also has a specialist clinical interest in the diagnosis and management of patients with complex sleep behaviour disorders and also epilepsy.  He is the author of a number of articles on these subjects.

He is the Chair of the Tayside and West of Scotland Managed Clinical Network for epilepsy.

His main research interests include understanding the pathogenesis of both rapid eye movement and non-rapid eye movement sleep disorders and also the forensic implications of sleep behaviours.  He also participates in trials for the treatment of epilepsy.

He completed his PhD in Neurosciences with Professor Hugh Willison at the University of Glasgow, and Professor Wes Thompson at the University of Texas in Austin, studying the pathogenesis of autoimmune neuropathies.  He previously worked with Professor Jack Griffin in Johns Hopkins hospital, Baltimore and has received funding support from the Wellcome Trust, Patrick Berthoud Trust and Carnegie Trust.

Dr Morrison graduated from the University of Glasgow, completing his clinical training in the Institute of Neurological Sciences in Glasgow and has been in post in Tayside since 2011.

Judith Newton

MND National Lead & Consultant Nurse (Scotland)

Having trained as a Registered General Nurse in Glasgow in 1988, Judy’s career led straight to that of neuroscience nursing. Judy’s first MND post was that of an MND Clinical Nurse Specialist for the South East of Scotland in 1998. Judy completed a Master’s Degree in Neuropsychology at the University of Edinburgh – her dissertation and research was the development of the Edinburgh Cognitive ALS Screen. Following the announcement to double the number of MND nurses in Scotland, Judy was appointed to the newly created post of MND Nurse Consultant in 2016, funded by the Scottish Government, MND Scotland, and the University of Edinburgh. Judy now is part of the senior management team for MND-SMART.  This includes the training and support of MND research nurses working on MND-SMART as well as overall leadership for the 15 MND nurse specialists located around Scotland.

Dr Richard Orrell

Consultant Neurologist, National Hospital for Neurology and Neurosurgery (UCLH NHS Foundation Trust)

Dr Richard Orrell is Senior Lecturer in the Department of Clinical Neurosciences, UCL Institute of Neurology, London.  He is also consultant neurologist at the National Hospital for Neurology and Neurosurgery (UCLH NHS Foundation Trust), Royal Free Hospital (Royal Free London NHS Foundation Trust) and QE2 Hospital Welwyn Garden City (East and North Hertfordshire NHS Trust).  Dr Orrell has a long standing interest in clinical and molecular genetic studies of motor neuron disease.  He has been local PI in clinical trails in MND/ALS. He is Co-Director of the Motor Neuron Disease Care and Research Centre at the National Hospital for Neurology and Neurosurgery, London. 

Suvankar Pal

Clinical Senior Lecturer in Neurology, University of Edinburgh

Dr Ashwin Pinto

Consultant Neurologist, Southampton University Hospitals

Dr Ashwin Pinto has worked for Southampton University Hospitals Trust since November 2003. He completed his postgraduate training in neurology at Radcliffe Infirmary in Oxford and Wessex Neurological Centre in Southampton. Dr Pinto is a postgraduate Research Fellow at Neurosciences Group, Institute of Molecular Medicine, Oxford University. Dr Pinto has established a Specialist Myasthenia Clinic and Plasma Exchange Service.

Dr Aleksandar Radunovic

Consultant Neurologist, Barts and the Royal London Hospital and Queen's Hospital Romford

Dr Radunovic is a Consultant Neurologist at the Barts and the Royal London Hospital and at the Queen's Hospital Romford.  He trained in neurology at King's College Hospital, the National Hospital for Neurology and Neurosurgery, Hurstwood Park Neurological Centre and St Thomas' Hospital. He holds a PhD in neuroscience from King's College London.

Dr Radunovic has been a Director of the Barts MND Centre since 2009. He actively contributes to the service developments at the national level and has sat on a number of specialist advisory bodies, including the National Institute for Clinical Excellence resulting in publications of the MND guidelines. Dr Radunovic is involved in basic science and clinical research and is an Honorary Clinical Senior Lecturer at the Barts and the London School of Medicine and Dentistry.

He has published papers in leading medical journals, written book chapters and contributed to the systematic reviews of clinical research for Cochrane Collaboration. He has a keen interest in medical education and is involved in teaching both undergraduate and postgraduate students as well as doctors in training.

Dr Muhammad Rafiq

Consultant Neurologist, Norfolk and Norwich University Hospitals NHS Trust

Read more about Dr Rafiq in the 'Meet the researcher' blog

Dr Pablo Garcia Reitboeck

Consultant Neurologist, St George's University Hospitals NHS Foundation Trust

Dr Pablo Garcia Reitboeck  trained in medicine at the University of Vienna, Austria and Université Pierre et Marie Curie (Paris 6), France, and was awarded a PhD in clinical neurosciences from the University of Cambridge in 2008, where he studied the molecular pathology of Parkinson's disease.

He completed his postgraduate medical training and neurology training in hospitals in and around London, including the National Hospital for Neurology and Neurosurgery and St George's Hospital. He then pursued a postdoctoral research fellowship at the UCL Institute of Neurology, where he studied the role of microglia (the immune cells of the brain) in Alzheimer's disease.

Dr Garcia Reitboeck now works as a consultant neurologist at St George's Hospital in London where he is a member of the MND service, which provides care to MND patients from SW London and surrounding areas. He has also set up a clinic for patients with myasthenia gravis and contributes to the acute neurology service at St George's Hospital.

Dr Rhys Roberts

Consultant Neurologist, Addenbrooke's Hospital in Cambridge

Rhys Roberts trained at the University of Cambridge and was also part of the University's MB PhD programme, working at the MRC Laboratory of Molecular Biology leading to the award of a PhD in 2002 and a Marie Curie Fellowship at the University of Southern Denmark.

In 2011, following the completion of higher specialist training in neurology in London and the East of England, Rhys was awarded a Wellcome-Beit Prize Fellowship to investigate the molecular pathogenesis of the inherited peripheral neuropathies, the Charcot-Marie-Tooth diseases, and was also appointed as a Consultant Neurologist at Addenbrooke's Hospital in Cambridge.

Rhys is director of the Cambridge MND Care Centre which provides multidisciplinary support for people living with MND from across a large area of eastern England and also runs the peripheral neuropathy service in Cambridge.

Professor Dame Pam Shaw

Consultant Neurologist, Sheffield Teaching Hospitals NHS Foundation Trust

Professor Shaw is the Founding Director of the Sheffield Institute for Translational Neuroscience (SITraN), one of the world leading centres for motor neuron disease research.

Professor Shaw graduated in medicine with first-class honours from the University of Newcastle in 1979. She undertook her MRCP and specialist training in neurology training in Newcastle. In 1988 she was awarded an MD with commendation for her work on the neurological complications of coronary bypass surgery.

After an intermediate fellowship award from the Wellcome Trust, she was awarded a Wellcome Senior Fellowship in Clinical Science which she held from 1991 to 2001, underpinning her program of work investigating molecular mechanisms of motor neuron injury and new therapeutic approaches in motor neuron disease.

In 1997 she was appointed Professor of Neurological Medicine at the University of Newcastle and in 2000 was appointed as Professor of Neurology at the University of Sheffield. As an undergraduate in Newcastle she was awarded the Stephen Scott, Gibb, Mary Gordon, Mona McNaughton and Phillipson prizes/scholarships.

Recent postgraduate awards include:

In 2014 she was awarded the Dame Commander of the Order of the British Empire (DBE) for services to Neuroscience in HM the Queen's New Year Honours.

She has authored more than 400 publications of original research (Google Scholar H-index 82), reviews and book chapters and has edited several books on ALS/MND. Her research is funded by the Medical Research Council, the Wellcome Trust, NIHR, the MND Association, the European Union and biotechnology and pharmaceutical industry partners. Since 1983 she has generated more than £56 million in research income.

From 2008–2015 she led the Clinical Studies Group for ALS/MND within the NIHR Dementia and Neurodegenerative Diseases (DeNDRoN) clinical research network which links 21 MND care and research centres and has developed a network of 10 UK centres experienced in MND clinical trials.  Professor Shaw has taken part in more than 15 MND clinical trials, including roles as UK Chief Investigator and steering committee member and also including several academic led studies. She is an active member of the European Network for the Cure of ALS (ENCALS).

Professor Kevin Talbot

Consultant Neurologist, John Radcliffe Hospital, Oxford

Kevin Talbot qualified in medicine from the University of London and trained in neurology in London and Oxford. His doctoral research was on the childhood motor neuron disorder spinal muscular atrophy (SMA) in the laboratory of Professor Kay Davies. He subsequently became Clinical Lecturer in Neurology and from 2001–2006 held an MRC Clinician Scientist Fellowship.

In 2010 he became Professor of Motor Neuron Biology, and in 2015 he was appointed Head of the Division of Clinical Neurology in the Nuffield Department of Clinical Neurosciences, University of Oxford. He currently co-directs the Oxford MND Care and Research Centre, a multidisciplinary team providing a clinical service for patients with motor neuron disorders, from all over the south of England.

Professor Talbot's research is focussed on in vitro and in vivo modelling of the earliest phases of ALS pathogenesis, to elucidate the basic mechanisms of motor neuron degeneration and accelerate the identification of disease modifying treatments. His team have created spinal motor and cortical neuronal models bases on induced pluripotent stem cells, and novel BAC-transgenic mice carrying TDP-43 or FUS mutations.

Current work is focussed using these models to identify drug targets using high and medium throughput screening. He also actively participates in therapeutic trials in MND and in clinical studies to improve management of MND.

Dr Alex Thompson

Consultant Neurologist, John Radcliffe Hospital, Oxford

Dr Thompson is a Clinician Scientist at the University of Oxford and Consultant Neurologist at the Oxford MND Centre. Dr Thompson’s research focuses on developing ways of measuring MND working towards individualised therapy and understanding early disease events using large population studies and studies of people who carry genes predisposing to MND but who do not have any symptoms of MND.

Dr Jon Tomas

Consultant in Palliative Care, University Hospitals Birmingham NHS Foundation Trust

Originally from Canada, Jon trained in the West Midlands where he also completed his speciality training in palliative medicine. His first consultant job was with the Coventry Community Palliative Care Team, but since 2017 he has been a consultant at the Queen Elizabeth Hospital Birmingham.

He is particularly interested in palliative care in non-malignant diseases and regularly works jointly with colleagues from neurology, cardiology and respiratory medicine. Jon is actively involved with both undergraduate and postgraduate medical education as well as the End-of-Life-Care Research Programme at the University of Birmingham. He is currently Chair of the Specialist Palliative Care Audit and Guidelines Group in the West Midlands.

Professor Martin Turner

Consultant Neurologist, John Radcliffe Hospital, Oxford

Professor Turner has been involved in MND research since 2000. His primary research interest is in developing markers of disease activity in MND. These are essential, not just to shorten the time from symptom onset to diagnosis, but to reduce the time needed to test new drugs, and to unravel core mechanisms of disease.

The Oxford Study for Biomarkers in MND (BioMOx) is a platform for studying all types of MND patient using the latest brain scanning and chemical analysis of blood, repeated at intervals to build up a picture of how markers change over time. It is hoped this might also provide clues to why MND spreads faster in some people than others.

Professor Turner is particularly interested in studying MND patients known to have a hereditary form of the condition due to a change in their genetic code. Studying their relatives can provide a vital window to the earliest changes, and so to the best pathways to target with drugs.

Janine Vince

Carer representative

My husband had the familial form of MND and died in January 1993. Since then I have been involved with the MND Association at branch level and also spent seven years as a trustee.

During my time as a trustee I served on the Research Advisory Panel as a lay member and have always had an interest in research as we need to learn more about this disease. I was invited to join the MND CSG as a lay member and have been involved for over 10 years.

Advancements since my husband's death have encouraged me greatly that we will one day find a cure and more treatments for this awful disease.

Cindy Whitbread

Lead Research Nurse, Motor Neurone Disease Association (MNDA)

Cindy is the Lead Research Nurse with the Motor Neurone Disease Association. After beingawarded her Adult Nurse registration with the University of Southampton, she has enjoyed an extensive and diverse research career, including working in national posts that cross the traditional boundaries of health and social care. Cindy has held multiple senior research roles including being matron for the Oxford Clinical Research Facility for cognitive health, and NIHR Clinical Fellow responsible for redesigning career pathways to support research opportunities for people within social care. She has a passion for equity of access to research choices, and for developing a research nursing workforce that meets the needs of everyone in society.

She has been a PI on multiple studies, worked closely with industry partners to develop research that is person centered, and has undertaken two empirical research studies exploring how the healthcare professional impacts a person’s research experience. She remains an alumna of the NIHR 70@70 Senior Research Nurse Leader Program and a committee member for several national boards, reviewing health and social care policy.

Dr Tim Williams

Consultant Neurologist, Newcastle

Dr Tim Williams is a Newcastle graduate (1990), and completed his training (and PhD) in the North East. He was appointed consultant neurologist to the Regional Neurosciences Centre in Newcastle in July 2000, when he assumed the medical directorship of the Newcastle MND Care and Research Centre.

Dr Williams has taken part (with the able assistance of many other MND centre staff members) in a large number of drug treatment trials for MND (including the original Riluzole trials).  However, for the present whilst the prospect of truly effective treatments for MND seems a long way away, Dr Williams academic and research interests centre around clinic interventions which might have a positive impact on the quality of life of MND patients and their families.  He was centrally involved in the pivotal trial of NIV conducted in Newcastle which remains the only controlled trial of this intervention in MND ever conducted. Other studies of interventions include PEG and diaphragm pacing. High quality multi-disciplinary care for all with MND is his goal!