Our international and local speakers are:
Professor Ammar Al-ChalabiKing’s College, LondonFinding causes of ALS, EpidemiologyProfessor Ammar Al-Chalabi is Head of the Department of Basic and Clinical Neuroscience at The Maurice Wohl Clinical Neuroscience Institute at King’s College London, and Neuropsychiatry Lead for the National Institute of Health Research Maudsley Biomedical Research Centre. He is a consultant neurologist, and Director of the King’s Motor Neuron Disease Care and Research Centre.He leads the multinational EU (JPND) funded BRAIN-MEND consortium which looks for overlaps and differences in neurodegenerative diseases, and previously led the multinational STRENGTH consortium which uses basic and clinical science to find new ways to treat ALS.He co-leads the international Project MinE Consortium which is undertaking whole genome sequencing of more than 22000 people, two thirds with ALS.He has won numerous awards, including the Charcot Young Investigator Award from the Motor Neurone Disease Association and the Sheila Essey Prize from the American Academy of Neurology, and was the subject of a biographical profile in the prestigious scientific journal The Lancet Neurology. He sits on multiple scientific advisory boards.
Grace ChenMassey UniversityEpidemiology NZ
Grace Chen has worked at the Centre for Public Health Research at Massey University since 2013 when she finished her Postgraduate Diploma in Public Health with Distinction (Massey University). Her research interests are mainly focused on the health effects of occupational and environmental exposures to hazardous agents.
She was part of the intervention study on wood dust by using Video Exposure Monitoring (VEM) method to measure the exposure assessment. She also worked as a tutor for World Bank Master of Public Health courses for Epidemiology Methods and International Occupational and Environmental Health.
Her current research portfolio is focused on occupational and environmental risk factors for Motor Neurone Disease (MND) in New Zealand. The current PhD thesis will identify occupations, and specific occupational and environmental exposures, that are associated with increased risk of MND.
Professor Orla HardimanTrinity College, DublinEpidemiology and pathogenesis, genetic and environmental factors
Orla Hardiman is the one of only two full Professors of Neurology in Ireland. She is Head of the Academic Unit of Neurology at Trinity College Dublin and Consultant Neurologist at Beaumont Hospital, where she is Director of the National Amyotrophic Lateral Sclerosis (ALS ) service . The clinic provides direct clinical care for over 80% of Irish patients with ALS.
In 2007 she received a prestigious Health Research Board Clinician Scientist Award, and moved her research group to Trinity College Dublin.
She was Academic Director of Trinity Biomedical Sciences Institute from 2015-18, and then took up a new role as National Clinical Lead in Neurology for the Health Service Executive in early 2019.
She leads a research group of over 35 individuals with a focus on Motor Neuron Disease. Her research group focuses on epidemiology, deep phenotyping, biomarker discovery, imaging and signal analysis and population genetics of ALS
Prof.Hardiman is Co- Chair of the European Network for Cure of ALS (ENCALS) and is Editor in Chief of the journal Amyotrophic Lateral Sclerosis and the Frontotemporal Degenerations.
Professor Chris McDermottUniversity of SheffieldProfessor of Translational Neurology, Consultant Neurologist, University of Sheffield
Prof McDermott studied for his medical degree at the University in Leeds graduating in 1994. He then continued is 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. Prof 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 Prof 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 improving trial design and leads or collaborates on a number of clinical trials in ALS.
Dr Anna MilesUniversity of AucklandSwallowing research: improved assessment, treatment, and medical education in dysphagia
Dr Anna Miles is a speech-language therapist. Anna is a senior lecturer at The University of Auckland. She is a researcher, lecturer and clinician in the area of voice and swallowing disorders. Anna runs a hospital-based student teaching clinic as well as an outpatient voice and swallowing rehabilitation clinic. She is the New Zealand Speech-language Therapists’ Association Clinical Expert in Adult Dysphagia. Dr Anna Miles started her career London after studying at University College London in the 1990’s. Anna has been in New Zealand since 2000.
The Swallowing Research Laboratory in the Centre of Brain Research at The University of Auckland, led by Dr Miles, strives to improve the lives of people with swallowing difficulties through improved assessment, treatment and medical education. The laboratory hopes to reduce the risks of pneumonia and death associated with swallowing difficulties as well as improve the quality of life of suffers.
Professor Alister NeillUniversity of Otago, WellingtonBSc, MB ChB, Dip Anaesth, FRACP, Sleep Medicine (11), MD
Alister is a Professor in the Department of Medicine, UOW and Respiratory & Sleep Physician at Wellington Hospital (CCDHB).
His research interests include: the epidemiology and pathophysiology of obstructive sleep apnoea (OSA), its relationship to cardiovascular disease, sleep health disparity, new sleep health technologies, home non-invasive ventilation (NIV). He has published 46 papers in high impact peer review journals, chapter author Australasian Sleep Medicine (2017) & co-authored professional guidelines. He is currently leading important collaborative research into the respiratory impact of neuromuscular diseases, physiological OSA traits and novel treatments for OSA.
In 1997 he established the UOWs WellSleep Sleep Investigation Centre and Research Group where as its director has fostered the training and careers of scientists, advanced trainee physicians and research students.
Recent professional achievements: American Thoracic Society Sleep & Respiratory Neurobiology Program Committee; President NZ Branch and Board Member Australasian Sleep Association; Inaugural board member NZ Sleep Health Foundation.
In his clinical role he works as a consultant physician providing clinical leadership for the Sleep and home NIV (175 patients) services across three regional DHBs.
Professor David OliverUniversity of KentPalliative care in MND
Dr David Oliver has recently retired from the full-time position as Consultant Physician in Palliative Medicine at the Wisdom Hospice in Rochester, Kent and is an Honorary Professor at the Tizard Centre at the University of Kent.
He has lectured and published widely on neurological palliative care, particularly on the care of people with motor neurone disease. He was Clinical Lead for the National End of Life Care Programme document End of Life Care in Long Term Neurological Conditions – a framework for implementation. He was the Chair for the UK National Institute for Health and Care Excellence Guidelines on MND, released in February 2016.
He has been involved in many projects across Europe is chair of the EAPC Taskforce on Neurology and Palliative Care and Co-Chair of the Palliative Care Specialty Group of the European Academy of Neurology. He is Chair of Research Group on Palliative Care of the World Federation of Neurology. He is a Fellow of the European Academy of Neurology.
He has written widely on the palliative care and symptom control of patients neurological disease, including “Motor Neurone Disease – a family affair” and as principal editor of “Palliative Care of Amyotrophic Lateral Sclerosis – from diagnosis to bereavement” with a third edition published in 2014. He also edited “End of life care in neurological disease”, published in 2013 and was first author of the paper “A consensus review on the development of palliative care for patients with chronic and progressive neurological disease” (Eur J Neurol 2016).
NZ MND RegistryNZ MND Registry
The New Zealand Motor Neurone Disease Registry was established in May 2017 to facilitate participation in research and clinical trials for people with MND. The Registry collects health and demographic information about its participants in order to be trial ready.
Over 300 people are living with MND at any one time in New Zealand. The Registry aims to capture information about every person with MND in New Zealand, to answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people.
Over time, the Registry it will facilitate the growth of the MND research field in New Zealand by enabling researchers to find study participants quickly and easily. The MND Registry will also provide valuable information to guide the future development of support services.
Dr Emma ScotterUniversity of AucklandPathways related to protein TDP-43, genetic screening of pwMND
Dr. Emma Scotter is Head of the Motor Neuron Disease Lab at the Centre for Brain Research, University of Auckland, and Director of the NZ Motor Neuron Disease Research Network.
She is also a Steering Committee member of the NZ Motor Neuron Disease Patient Registry.
Dr. Scotter’s research team investigates the molecular mechanisms of MND pathogenesis, with a focus on protein quality control and genetic modifiers thereof, using human patient post mortem brain cells and tissues.
While New Zealand’s population is small, Dr. Scotter’s team have shown that our rates of MND are among the highest in the world.
Through collaboration with MND research groups and pharma internationally, Dr. Scotter aims to have New Zealanders included in genetic cohort studies and to enable access for New Zealanders to emerging gene-based therapies.
Professor Chris ShawKing’s College, LondonIdentifying disease-causing genes and pathways for drug manipulation
Christopher Shaw is Professor of Neurology and Neurogenetics at King’s College London. His clinical training was conducted in New Zealand and in 1992 he came to Cambridge, UK on a Wellcome Trust Fellowship. In 1995 he moved to King’s College London and he runs a clinic for people with motor neuron disorders at King’s College Hospital. Over the past 15 years he has led an initiative to build the Maurice Wohl Clinical Neuroscience Institute, where he is the Director. He is also an Associate Director of the UK Dementia Research Institute.
Over the past 25 years his team have discovered many gene mutations that can cause MND. These genes are now tested in laboratories around the world. From these discoveries they have also developed a large number of stem cell and transgenic mouse models of disease that they have made freely available to other researchers internationally. Research on these models of MND have revealed important insights into disease mechanisms, identified novel therapeutic targets and new hits from drug screens. Their major focus for the future is to develop gene therapies using antisense oligonucleotides and adeno-associated viral gene vectors which will be the focus of todays lecture.Talk Title: Are we there yet? Progress on the path to gene therapy for MND
Ms. Sarah SolomonOccupational Therapist, Calvary Healthcare, BethlehemBest practice models of care
Sarah Solomon is the senior Occupational Therapist (OT) at the State-wide Progressive Neurological Diseases Service (SPNDS) at Calvary Health care Bethlehem in Melbourne Australia. SPNDS is recognised for providing specialist care to people with MND. Services provided include neurological and palliative consultancy, symptom management, neuropalliative rehabilitation and end of life care. Sarah is also a consultant OT in the field of Electronic Assistive technology (EAT) for a technology supplier called Zyteq. www.zyteq.com.au.
Sarah graduated from Curtin University (Perth, WA) in 1995. She has worked in Perth, London and Melbourne in many fields. In 2007 she started working at SPNDS and realised how important quality of life interventions were for people living with progressive neurological conditions. She has a passion for ensuring people with MND can live their best life within the changes occurring. She has lectured at universities and presented at many conferences on OT and MND in a variety of topics.
In a strange twist – in 2012 Sarah’s mum was diagnosed with MND so Sarah went home to care for her until she died. This has given her a unique and special insight into the challenges of living with MND.
Dr Dean SutherlandUniversity of CanterburyAugmentative and alternative communication technology and strategies
Dean Sutherland is a senior lecturer in the School of Psychology, Speech and Hearing at the University of Canterbury. His research interests include communication across the life span, the use of augmentative and alternative communication approaches when speaking is difficult. This has recently involved the use of voice-banking technology to develop kiwi-accented voices for the use on speech-generating devices. His teaching includes ethics, cultural responsiveness, and professional practices for speech-language therapists. Dean also chairs of the University’s Human Ethics Committee.Talk Title: Voice-banking in New Zealand: opportunities and challenges
Assoc. Professor Paul TalmanDeakin UniversityEffectiveness of multidisciplinary clinics for MND and progressive neurological diseases
Paul Talman completed a Bachelor of Science followed by medical training as a specialist neurologist and completing a PhD in Developmental Neurobiology at the Walter and Eliza Hall Institute of Medical Research in Melbourne Victoria. In 1992 he began working with Dr Susan Mathers as a clinical neurologist specialising in MND. In 2004 Paul Talman initiated the Australian MND Registry bringing together the leading clinical neurologists from around Australia to design and build a national registry for MND. Since that time this group has developed a web based data collection system which has registered and followed over 2,500 MND patients and published on disease phenotypes and key stages in disease progression and survival.
The most recent area of significant work has been the study and policy development for multidisciplinary clinics in progressive neurological diseases. With the primary investigator Dr Susan Mathers (Calvary Healthcare), he was a coinvestigator in the creation and analysis of multidisciplinary clinics for MND /progressive neurological diseases, firstly at Calvary Healthcare and then at Barwon Health. This project quantified and demonstrated the effectiveness of progressive neurology clinics for this disease group and provides a template for national policy development in chronic disease clinics.
Professor Martin TurnerOxford University & Oxford MND Clinic
Martin Turner is Professor of Clinical Neurology & Neuroscience within Oxford University’s Nuffield Department of Clinical Neurosciences. He is honorary consultant neurologist to the John Radcliffe Hospital, and co-director of the Oxford MND Clinic. Working in partnership with MND patients for 20 years, his focus is the development of biomarkers from neuroimaging and biofluid assays, to accelerate therapy discovery. He chairs the Research Committee of the Association of British Neurologists, and is an Associate Director of the Oxford University Clinical Academic Graduate School. He sees general neurology patients, including on call, and is a prolific educator of medical students, doctors of all grades, allied healthcare professionals and the public. He has more than 220 peer-reviewed publications listed and is co-author of several books: ‘Fast Facts – Diagnosing ALS’ (Karger), ‘Landmark Papers in Neurology’ (OUP), ‘MND – A Practical Manual’ (OUP), ‘The Oxford Textbook of Neuromuscular Disorders’ (OUP) & ‘The Beginner’s Guide To The Brain’ (Oneworld).