Members

How to join

We welcome new members to the UK Motor Neurone 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. Information on monthly meetings and activity is sent via email. All members are regularly informed about current research activity and performance, funding opportunities and new research projects (commercial and non-commercial) that they can become involved in.

The UK MND CSG currently has 36 members including those below – you can find more information by clicking on a member 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)

Clinical Research Manager, SITraN, University of Sheffield

Stacy received a first-class BSc(Hons) 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, including a research council, the NHS, the NIHR Clinical Research Network (CRN), and University.

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 experienced in:

  • Preparing and submitting applications for ethical and regulatory authority review and securing all necessary permissions.

  • Managing and overseeing the activities of clinical research teams.

  • Strategic planning and management of research finances.

  • Project management of a programme of advanced therapy medicinal product (ATMP) research.

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 MND Speciality Coordinator for the UK MND Clinical Studies Group (UK MND CSG), supporting the development and delivery of the Clinical Research Network (NIHR CRN) Portfolio of MND 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 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.

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

  • providing strategic guidance to the Association's research activities

  • raising the Association's profile within the biomedical and clinical research communities

  • increasing the quantity and quality of Association-sponsored and collaborative research

  • organising the annual International Symposium on Amyotrophic Lateral Sclerosis/Motor Neuron Disease, and

  • communicating advances in MND research to lay and specialist audiences.

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.

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 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.

Dr Hisham Hamdalla

Consultant Neurologist, Salford Royal Foundation Trust

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

  • MBBS (University of Khartoum – Sudan)

  • MRCP (UK)

  • FRCP (Edinburgh and London)

  • MD – Research (Newcastle Upon Tyne -UK)

  • Certificate of Completion of Specialist Training in Neurology (CCST – UK)

  • Examiner for the Royal Colleges of Physicians – MRCP Part 2 (PACES examination)

  • Clinical Governance Lead for the Neuromuscular Group

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.

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 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.


Lisa Milella

Patient representative

I have a science background and since diagnosis in August 2013 I stay up to date with ALS research worldwide.

I have been quite frustrated with the difficulty of enrolling on a clinical trial and finding a trial relevant to my own circumstances. Yet, at the same time I understand trial protocols, ethical review, home office licences and the delays these can all cause.

Through contact with other MND patients and my own experience I realise how complex and variable the disease is and the challenges this imposes on research. I feel that there has been significant progress with understanding the disease and I know how important it is for good quality research to continue.

Professor Karen Morrison

Clinical Director of MND Care Centre, Belfast

Professor Karen Morrison is Dean of Education, School of Medicine, Dentistry and Biomedical at Queen’s University, Belfast and Clinical Director of MND Care Centre, Belfast.

Professor Karen is also an Honorary Consultant Neurologist at University Hospital Southampton, where she runs MND clinics in the Wessex Neurology Centre.

Karen graduated in medicine from the University of Cambridge (1983, BA; 1986, MA) and University of Oxford (1986, BMBCh). Following postdoctoral research in the Department of Internal Medicine at Yale University USA, she returned to Oxford supported by MRC and Wellcome Trust Fellowships, undertaking research into inherited disorders of motor nerves.

She was appointed Medical Research Fellow at Corpus Christi College, Oxford and completed her clinical training in neurology at the Radcliffe Infirmary, where she was appointed Honorary Consultant Neurologist in 1998. In 1999 she took up the post of Bloomer Professor of Neurology at the University of Birmingham, combining research into molecular genetic mechanisms in neurodegenerative disease with neurology/neuroscience teaching and overview and strategic development of the undergraduate MBChB final year.

As a clinical neurologist she co-directed the Birmingham Motor Neurone Disease Care and Research Centre at the Queen Elizabeth Hospital, and also led the first national service for adults with Wolfram Syndrome.

She has published over 150 peer reviewed articles, mainly on clinical and molecular genetic aspects of neurodegenerative disease. Her laboratory research has investigated molecular mechanisms in motor neurone disease and Parkinson's disease, underpinned by establishing large DNA banks linked to clinical and epidemiological data. She serves on several national and international panels advising on clinical and research aspects of neurodegeneration.

Karen moved to the University of Southampton in 2016 to lead the education programmes within the Faculty of Medicine. Current key roles include ensuring that all faculty programmes are up to date, relevant and responsive so that graduates are equipped with the clinical, academic and professional skills to ensure successful careers in medicine and research as lifelong learners.

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.

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.

Dr Nikhil Sharma

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

Nik Sharma qualified from the University of Liverpool and was awarded a PhD by the University of Cambridge. After Cambridge, he was awarded an NRSA fellowship to work at the National Institute of Health (NIH), Bethesda, USA.

His lab at UCL combines different techniques and approaches to understand neurodegeneration and neuroplasticity of the motor system in 'real world' people living with motor neuron disease (thesharmalab.com). More recently the lab has begun to explore the link between the gut microbiome and the microglia and is carrying out the first trial of a faecal microbiome transplant (FMT) in people living with MND (BIOMAX-ALS).

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:

  • Association of British Neurologists Sir Charles Symonds award (1991, 1996, 2001)

  • American Academy of Neurology Sheila Essey award 2001

  • UK Royal College of Physicians Jean Hunter award 2006

  • The International ALS/MND Forbes Norris award 2007

  • Fellowship of the Academy of Medical Sciences 2007

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,t 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 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.

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!