Explore the conference
Please press the + sign to expand on the sections to see an outline of the sessions and more about our speakers.
Join volunteer and person with Parkinson’s, Laurel Miller, as she talks to experts Steve Gentleman from the Parkinson’s UK Brain Bank and neurologist / researcher Alastair Noyce. This informal session will explore what happens inside the brain in Parkinson’s, the symptoms people experience, how the condition is diagnosed and what we know so far about its complex causes.
Person with Parkinson’s
Laurel Miller was diagnosed with Parkinson’s seven years ago. She attended First Steps, a training programme delivered by PUK and the European Parkinson’s Therapy Centre run by Alex Reed in Italy, and on the back of that co-founded Fighting Fit, a weekend residential programme for active people with Parkinson’s who want to learn how to live well with the condition in the UK. She is a member of the PUK Research Participation Steering Group and a PPI Engagement representative for the recently launched Edmond J. Safra Accelerating Clinical Treatments for PD Initiative. She is a keen advocate of using exercise to delay the progression of Parkinson’s symptoms as much as possible, and has participated in clinical trials and investigations with the same aim. Since taking early retirement in 2018 from her job working with children with Special Educational Needs she has volunteered with Barnardo’s supporting parents.
Director of Parkinson’s UK Brain Bank, Imperial College London
Steve Gentleman is Professor of Neuropathology in the Department of Brain Sciences at Imperial College London. For the past 30 years he has run an active research team investigating the pathology of neurodegenerative disorders, such as Parkinson’s and Alzheimer’s, and of traumatic brain injury. He is the Scientific Director of the Parkinson’s UK brain bank at Imperial and has carried out diagnostic examination of over 1000 brains. Over the past few years his team have published some key papers with respect to the possible long-term consequences of repeated blows to the head in boxers, the development of new 3D histology techniques for the investigation of human brain tissue and novel observations about the pathology seen in the brains of people living with Parkinson’s. In addition to his research interests, Steve has a key educational role in the Faculty of Medicine, teaching medical students and doctors at all levels. In his spare time Steve relaxes by climbing and walking in the mountains.
Reader in Neurology and Neuroepidemiology and Consultant Neurologist, Queen Mary University Of London & Barts Health NHS Trust
Dr Alastair Noyce is a Reader in Neurology and Neuroepidemiology in the Preventive Neurology Unit at the Wolfson Institute Of Preventive Medicine, Queen Mary University Of London, and a Consultant Neurologist at Barts Health NHS Trust. His main research interests are Parkinson's disease and related neurodegenerative disorders, particularly early identification, and epidemiology, including environmental, clinical and genetic determinants. Since 2011 he has led the PREDICT-PD study, which is a large cohort study that aims to identify those in the earliest stages of Parkinson's, who may one day benefit from drugs that could slow or even halt the disease. He works in East London, home to a diverse and under-represented population. His clinical practice and research focus locally are on understanding and reducing inequities in treatment and improving access to care for patients with Parkinson’s.
This session led by senior nurse and Parkinson’s advocate Clare Addison, consultant Richard Walker and Parkinson’s nurse Andrea Stutt will cover everything you need to know about the current treatment options for Parkinson’s. Together they will explain the medicines available and how they work, surgical options like deep brain stimulation and discuss the importance of physio, occupational and speech and language therapy.
Matron for Surgery, Surrey and Sussex Healthcare NHS Trust
Co-lead of the Parkinson’s UK Excellence Network for the south east of England
Person with Parkinson’s
I have been working in various senior nursing roles over the last 30 years with a special interest in neurosciences. I am passionate about ensuring patients receive the best possible care. I was diagnosed with Parkinson’s in 2016 and have so far continued to work within the NHS, now as Lead Nurse for Adult Safeguarding. I have taken an active part in supporting Parkinson’s UK with fundraising and I am co-lead of the Excellence Network for the South East.
Consultant Physician, North Tyneside General Hospital
Richard Walker is a Consultant and previous Director of Research & Development at North Tyneside General Hospital, and Honorary Professor of Ageing and International Health at Newcastle University. He is the Clinical Lead for the Northumbria Parkinson’s disease service. His research interests in Parkinson’s include epidemiology, psychiatric symptoms, palliative care, respiratory symptoms, exercise and sub-Saharan Africa (SSA). He was on the UK Parkinson’s NICE Guidelines 2017 Development Group and the Parkinson’s Quality Standard Advisory Committee for NICE. He is consultant lead for the Parkinson’s UK Excellence Network. He is immediate past Chair of the Movement Disorders Society African Task Force and on the committee of WHO working group for Parkinson’s in LIMCs.
He has a research interest in other non-communicable diseases in SSA including stroke, epilepsy, hypertension, dementia, fluorosis and frailty. He has undertaken stroke research in relation to mortality, risk factors and prevalence, and led the Tanzanian stroke incidence project. He is Associate Global Director for SSA for the Royal College of Physicians, London and is the Clinical Lead for the Northumbria/Kilimanjaro Christian Medical Centre health link which started in 1999. He has published over 240 peer review papers.
Parkinson’s Nurse Specialist, Northumbria Healthcare NHS trust
PD nurse specialist working with Northumbria healthcare trust, previous experience working on in patient neurology ward and out patient clinical research in Parkinson’s
This session will take a peek at emerging new treatments and therapies that are currently in the pipeline for Parkinson’s. Deputy Director from Cure Parkinson’s Simon Stott together with Parkinson’s advocates Kevin McFarthing and Paula Scurfield will share their thoughts on the most promising areas, and we’ll highlight how you can keep your finger on the pulse of opportunities to take part in research.
'I was diagnosed with Parkinson’s disease in 2014, the 4th person in my family to have the condition. My passion for participating in clinical trials, and assisting with research activities, stems from witnessing at first hand the difficulties my late father experienced dealing with his PD. His condition also had a profound impact on my mother’s life as she struggled, in her 80s, to care for him. Before retirement I worked as a geography teacher and university lecturer in Hong Kong, Washington DC, Beijing, and the UK. Since diagnosis we have continued to travel, the highlight being a trip to Argentina, Chile, and Antarctica where we saw half a million penguins and their chicks on a beach…an unforgettable sight. A word of advice: never stand directly behind a penguin!'
Parkinson’s Research Advocate
Dr Kevin McFarthing is a PhD biochemist. His career included senior R&D positions in life sciences research products with Amersham, diagnostics with Serono and consumer healthcare with Reckitt Benckiser. He also ran his own consultancy business focused on the effectiveness and efficiency of innovation management.
Kevin was diagnosed with Parkinson’s in 2012. Since then he has actively engaged with research into the condition. He is joint editor of the Clinical Trial Highlights section of the Journal of Parkinson’s Disease and a member of the Research Committee of Cure Parkinson’s.
He collates the Parkinson’s Hope List, a database of potential therapies in research and clinical stages. He was the first author on a review of the clinical trial pipeline in Parkinson’s in 2020, with a 2021 update just published in JPD.
Deputy director of research, Cure Parkinson's
Simon is the Deputy Director of Research at Cure Parkinson's. The Trust is an international supporter of both lab- and clinic-based research on Parkinson's. Originally from New Zealand, Simon has over 15 years of experience in the field of Parkinson's research - in both the academic and biotech sectors. He has been involved in lab-based research as well as clinical studies, with a number of scientific publications. He also maintains the 'Science of Parkinson's' website, which attempts to explain in plain English the research currently being conducted on Parkinson's.
Over 200 years since Parkinson’s was first identified and we are still searching for a cure. In this session we’ll look at some of the challenges that are standing in our way, and what we can all do together to accelerate progress. We’ll hear from leading researcher and neurologist Sonia Gandhi, PD Avenger Marc van Grieken and Parkinson’s UK Director of Research Arthur Roach.
Director of Research, Parkinson’s UK
Arthur is Director of Research at Parkinson’s UK, where he is responsible for the strategy to convert the demands and priorities of people living with Parkinson’s into better treatments and a deeper understanding of the condition.
After earning a PhD in biochemistry and molecular biology at Caltech and postdoctoral work at Cornell Medical College Arthur was appointed to the faculty of the Department of Molecular and Medical Genetics of the University of Toronto. For fifteen years he held senior positions with responsibilities for preclinical research, therapeutic area strategy and in-licensing, in international pharmaceutical companies in the US and Europe (DuPont, Bristol-Myers Squibb, Merck Serono). Arthur is the founder of Chord Therapeutics, President of the Geneva Pharma Network, and serves on the boards of directors of Vivifi Biotech, Keapstone Therapeutics and NRG Therapeutics.
MARC VAN GRIEKEN
PD Avenger and Parkinson’s advocate
Marc is a Landscape Architect with his own practice (MVGLA), a Fellow of the Landscape Institute (LI) and is on the LI’ s Board of Trustees. He is a EUPATI Fellow (European Academy for Therapeutic Innovation) in patient advocacy, chair of Parkinson’s UK’s Dundee Research Interest Group, and active member of the Research Support Network Development Team. Marc is also a PD Avenger and chair of the PD Avengers Research Arm.
Professor of Neurology
Sonia Gandhi is an MRC Senior Clinician Scientist and Professor of Neurology, a Group Leader of the Neurodegeneration Biology Laboratory, and an Assistant Research Director at The Francis Crick Institute.
Sonia obtained an MA in Neuroscience at the University of Cambridge, and a degree in Medicine at the University of Oxford, and completed a PhD in Neuroscience at UCL Institute of Neurology, through a Welcome Clinical Research Training Fellowship. She was awarded an NIHR Lectureship in Neurology at Imperial College London in 2009, to pursue postdoctoral research, and a Welcome Trust Intermediate Fellowship in 2013, to establish her own laboratory at the UCL QS Institute of Neurology, seconded to the Francis Crick Institute in 2017. In 2020 she was awarded an MRC Senior Clinical Fellowship. Her research program focuses on understanding the molecular mechanisms that cause neurodegenerative diseases, specifically Parkinson’s disease. Her laboratory has adopted an interdisciplinary approach combining single molecule biophysics with human stem cell systems to understand how proteins misfold in the brain. As a clinician, she leads a clinical research centre for patients with Parkinson’s: the UCL Queen Square Movement Disorders Centre, which brings together clinicians, surgeons, therapists, nurses, and laboratory researchers, and data scientists, and seeks to develop precision medicine approaches for patients with Parkinson’s.
The overall mission of the centre is to accelerate translation from scientific discovery to patient benefit, through the discovery and development of biomarkers, therapeutic targets and clinical trials.
In this session we’ll be hearing about how the gut is connected to Parkinson’s and discovering the importance of diet and nutrition from our experts Richelle Flanagan, Dr Filip Scheperjans, and Dr Lynne Barker. We’ll get advice that people can apply to their lives right now and find out how researchers are turning to the microbiome to develop the treatments of tomorrow.
Registered Dietitian and Nutritionist and founding member of the PD Avengers
Richelle has over 17 years’ experience practicing as a Dietitian in the public setting and then with her own nutrition consultancy Be Nutrition Wise. She has spent much of her career advocating for better nutritional care for people living with chronic disease. Being diagnosed with Coeliac Disease and subsequently Young Onset Parkinson’s (YOP), Richelle was a board member of the Coeliac Society of Ireland and chair of their Clinical Advisory Board. She is a committee member of the Dublin branch of the Parkinson’s Association of Ireland, a World Parkinson Congress Ambassador, founding member of the PD Avengers and the Women’s Parkinson’s Project. She is passionate about using her dietetic and advocacy experience to change the lives of people living with chronic disease. She lives in Ireland with her husband and two children, and her dog and cat. She was an international hockey player and has a love of the outdoors with a recent love of sea swimming after her Dopamine Dunk fundraiser in May where she swam everyday to raise funds to send people with YOP to the World Parkinson Congress in Barcelona in 2023.
Adjunct Professor of Neurology, Department of Neurology, Helsinki University Hospital, Finland
I am a clinical neurologist mainly working in the field of Parkinson’s disease and other movement disorders. For the last 10 years my focus has been on elucidating the role of gut bacteria in the development and progression of Parkinson’s disease. I hope that at some point this will lead to new therapeutic approaches that may improve the life of Parkinson’s patients or even help to slow down, stop or prevent Parkinson’s.
Reader in Cognitive Neuroscience, Sheffield Hallam University
Dr Lynne Barker is an Associate Professor of Cognitive Neuroscience within the Centre for Behavioural Science and Applied Psychology, Psychology Dept., Sheffield Hallam University, Sheffield, UK. For the past two decades, she has worked closely with clinical collaborators investigating effects of brain injury, stroke and dementia on cognitive function and behaviour, and more recently, investigating the microbiome in motor disorders. She was awarded the Medipex Prize (2016) for innovation in the treatment of patients with cognitive deficits in the NHS. She is presently conducting several studies investigating the gut microbiome and potential therapeutic effects of probiotics on symptoms, behaviour and cognition in Parkinson’s Disease, Multiple Sclerosis and Amytrophic Lateral Sclerosis, in conjunction with The University of Sheffield and Sheffield Institute for Translational Neuroscience, and in collaboration with Symprove.
In this two part session, we’ll first hear from Dr Nienke De Vries about evidence for the benefits of exercise in Parkinson’s and what happens in the body when we exercise. This will be followed up with practical advice from Julie Jones on how to structure an exercise plan for Parkinson’s, including information on the benefits of different types of exercise, how to get started and stay motivated, with important insights from Andrew Cassy, UK Ambassador for Parkinson Table Tennis.
NIENKE DE VRIES
Postdoctoral researcher, Radboud University Medical Centre, Nijmegen, the Netherlands
Dr. de Vries was trained as a human movement scientist and physiotherapist. She works as a researcher at the department of Neurology, Radboud University Nijmegen Medical Centre, the Netherlands. She received her PhD in the field of physical activity, mobility and physiotherapy in geriatrics, including frail elderly with multiple conditions like Parkinson’s Disease and cognitive decline. After her PhD (2015), she specialized in Parkinson’s disease at the Expertise Center for Parkinson’s and Movement disorders (Nijmegen, The Netherlands), where her research focuses on; 1) non-pharmacological interventions, in particular exercise; 2) using technology as part of personalized, efficient and, accessible healthcare.
Chief Scientist Office and PUK Clinical Academic Fellow, Robert Gordon University, Aberdeen
I am very fortunate in that my current role encompasses clinical, research and teaching. I am a physiotherapist who is passionate about the value of physical activity for people with Parkinson’s, and improving services from diagnosis for this community. I am involved with a number of projects working with Parkinson’s UK to improve access to physically activity, and improving the quality of exercise provision throughout the UK. In Scotland, I am part of the Parkinson’s UK Strategic Advisory Board and Chair the Lottery funded Parkinson’s Active project. My current role is funded by the Chief Scientist Office and Parkinson’s UK. My PhD research is exploring a collaborative approach to exercise delivery for people with Parkinson’s, combining 1:1 and group-based exercise delivered by Parkinson’s specialists physiotherapists and fitness instructors. The aim of the PDConnect intervention is to provide people with Parkinson’s the knowledge and skills to effective self-manage their exercise participation. I am also particularly interested in the walking patterns of people with Parkinson’s, and am currently exploring the use of Smart glasses and their impact of walking quality. As a senior lecturer at the Robert Gordon University, I enjoy teaching on the undergraduate and postgraduate physiotherapy programmes.
Parkinson’s Table Tennis UK founder and Parkinson’s research advocate
Andrew lives in east Suffolk with his family and pet dog Hazel. He was diagnosed with Parkinson’s in 2010 aged 44, was medically retired in 2017 and is an active member of Team Parkinsons. He has been a pro-active advocate of research; a serial study volunteer; several PPI engagements; RIG-East founding member, and lots of local PUK branch talks. Andrew recognises the importance of exercise as an essential part of the broader Parkinson’s therapy package, which all people with Parkinson’s need to develop as part of their individual treatment plan. His life-long passion has been table tennis, having founded the PingPongParkinson® (PPP) UK group. This group recently completed a three tournament triumph, which culminated in 6 of the UK team players winning 9 medals at the ITTF Parkinson World Table Tennis Championships 2021 held in Berlin 9-11 September, including two Gold medal world champions. Andrew is now keen to promote TT as a fun way to exercise for all Parkinson’s people, and help get more PPP groups established across the UK.
In this session, we’ll be chatting about the breadth of the term "care team" and sharing insight on how people can best make contact with the right healthcare professionals. We’ll be joined by specialist speech and language therapist, Caroline Bartliff, who will share her experiences and advice. This will be followed by a panel discussion with volunteers Sue and John Whipps and our own Katherine French from the UK Parkinson’s Excellence Network as we discuss what relationships with care teams look like and find out more about the services available to those affected by Parkinson’s.
Specialist Speech and Language Therapist, Derbyshire Community Health Services
Caroline has been a practicing Speech and Language Therapist for 20 years, specialising in Parkinson’s and related conditions since 2009. She is part of the Derby Parkinson’s multidisciplinary team, with a passion for research and creating a service that is person-centred, effective and based on the latest evidence base.
She has been a member of the Parkinson’s East Midlands Research Committee (PEMRIG) for the past 6 years. Her membership on the committee facilitates getting research into practice and sharing this knowledge with all key stakeholders.
She is the lead therapist on the Parkinson’s National Audit; has designed a local clinical guideline for Speech Therapy (S<) and is working towards the creation of a National UK S< guideline. Newly qualified Induction training is a priority for services, so Caroline is supporting Parkinson’s UK in the roll out of the Therapy Induction Programme. She has a drive to inspire the emerging workforce and has been delivering annual National training on Parkinson’s and Atypical Parkinson’s for the past 10 years.
Parkinson’s UK Volunteer and Care Partner
I am retired and living in Cornwall with my partner who has had PD for 14 years. I am very involved with research, being a Patient and Public Involvement (PPI) representative on Trials Management Groups and in designing two new digital NHS services.
I am a member of the study design and the PPIE subgroups for ACT-PD.
Person with Parkinson’s and PPI enthusiast
I retired from Warwick University due to Parkinson’s at 54. After moving to Cornwall, I undertook various roles in the local PUK group. I then extended my interests in Parkinson’s research, including attending World Parkinson’s Congresses, through Membership of PUK RSN, acting as a Volunteer research speaker and as a lay reviewer of research papers and grant applications. I actively promote the role of Patient and Public Involvement (PPI) in all stages of the research process. I was a patient and lay co-applicant in several projects.
Many of these activities are joint with my wife, Sue.
Service Improvement Programme Manager, UK Parkinson's Excellence Network, Parkinson's UK
I have worked for Parkinson's UK for the last 15 years. My role is the Service Improvement Programme Manager within our Excellence Network team. I also manage our Nurse Development Programme to support the development of new nurse posts and work closely with all our Parkinsons Nurses to ensure that they are equipped with the tools and resources to be able to deliver high quality care to people with Parkinsons. I also work closely with commissioners and service planners to ensure that they are developing and commissioning the right level of service and ensuring that they are future proofing their services and thinking about succession planning.
With Clinical Professor Indu Subramanian, certified coach and carer Suzanne Bourne and Parkinson's Advocate Tim Hague, we'll be discovering some of the many therapies and practices that are available for people with Parkinson’s and their loved ones and finding out why they are helpful. In this session, you’ll hear about the scientific evidence behind some of the more well known therapies and hear practical tips for wellbeing. We hope you’ll come away feeling inspired to implement some of these strategies into your daily life!
Clinical Professor, UCLA Dept of Neurology
Dr. Indu Subramanian received her medical degree from the University of Toronto, Canada. She did her neurology residency and Movement Disorders fellowship training at UCLA. Dr. Subramanian has stayed on at UCLA and is now a Clinical Professor of Neurology. She established the movement disorder clinic at the West Los Angeles Veterans Administration and has assumed the position of the Director of the South West PADRECC (Parkinson Disease Research, Education and Clinical Care) Center of Excellence in Parkinson Disease. She has developed a strong interest in integrative medicine with a special interest in Yoga and Mindfulness. She underwent a 200 hour yoga teacher training and studied mindfulness at the VA with J.G.Serpa and Christian Wolfe through Insight LA. She is designing a yoga teacher training program for yoga instructors who are interested in working with PD patients. Dr. Subramanian recently got board certified in Integrative medicine. She is also passionate about palliative care in Parkinson Disease. She is doing a contemplative fellowship for health care providers through the New York Zen Center and is an AAN Palitucci Fellow. She is the host of a virtual support group with world experts in PD and co-edits a blog for PD patients.
Co-founder & Head of Carer Support, Mobilise Care Ltd
Suzanne is an International Coach Federation certified coach with a passion for self-management and peer support. Her expertise includes creating safe online spaces for peer support. She worked with Parkinson’s UK as part of the self-management team and was responsible for developing the programme to support carers and partners as well as creating an online version of the programme. Now as Co-founder and Head of Carer Support for Mobilise she heads up a service that provides scalable digital support, 1-1 coaching, virtual cuppas and an online peer support community for carers. She also provides private 1-1 coaching. As mum to 2 teenage girls and carer to her husband Matt, diagnosed with Young Onset Parkinson’s 18 years ago, she holds a big focus on quality of life. The family motto is do things while you can in a way that works for you!
Parkinson's Advocate & Winner of The Amazing Race Canada
Tim is a retired nurse of 20+ years who devotes his time to professional speaking, writing and as founder of the Parkinson’s wellness centre, U-Turn Parkinson’s. He is a cofounder of the global alliance The PD Avengers. He is a published author (Penguin Random House Canada) of the bestselling book Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined. He has spoken for Tedx and is sought after across North America for his motivational and inspiring presentations. After having been diagnosed with Young Onset Parkinson’s Disease at the age of 46 Tim and his son went on to win the first season of the reality television series The Amazing Race Canada. He is an outspoken and effective advocate on behalf of people living with Parkinson’s.
Over the past decade, there has been a shift in our understanding of Parkinson’s and why it affects people in such different ways. Today, many researchers are convinced that there are different subtypes of the condition and that understanding them may be the answer to developing better treatments and providing better care. In this session, leading experts Professor Michele Hu and Professor Alberto Espay, and BBC journalist Rory Cellan-Jones will discuss what we know about the subtypes of Parkinson’s and where this research can take us.
Consultant Neurologist at Oxford University Hospitals, and Professor of Clinical Neuroscience at the Nuffield Department of Clinical Neurosciences, University of Oxford
Michele is a Consultant Neurologist at Oxford University Hospitals, and Professor of Clinical Neuroscience at the Nuffield Department of Clinical Neurosciences, University of Oxford. Her work focuses on biomarkers for early and prodromal Parkinson’s, with particular focus on REM sleep behaviour disorder (RBD). The Oxford Parkinson's Disease Centre looks at longitudinal cohort studies on Parkinson's and related movement disorders. Other research interests include the delivery of low cost wearable technology that could have real impact on patients’ daily lives, and imaging the human brain from prodromal to established Parkinson’s.
Professor of Neurology, University of Cincinnati
Dr. Alberto Espay is Professor and Endowed Chair of the James J. and Joan A. Gardner Center for Parkinson’s disease at the University of Cincinnati. He has published over 280 research articles, 30 book chapters, and 7 neurology textbooks, including Common Movement Disorders Pitfalls, which received the Highly Commended BMA Medical Book Award in 2013. With Parkinson patient and advocate Benjamin Stecher, he co-wrote Brain Fables, the Hidden History of Neurodegenerative Diseases and a Blueprint to Conquer them, selected by the Association of American Publishers for the PROSE Award honoring the best scholarly work in Neuroscience published in 2020. He has served as Chair of the Movement Disorders Section of the American Academy of Neurology, Associate Editor of Movement Disorders, and in the Executive Committee of the Parkinson Study Group. He currently serves the International Parkinson and Movement Disorders Society as Chair of the Task Force on Technology, as Secretary of its Pan-American Section, and as President-Elect. His research efforts have focused on the measurement of motor and behavioral phenomena in, and clinical trials for, Parkinson’s disease as well as in the understanding and management of patients with functional movement disorders. Dr. Espay has received numerous awards, including the Dean’s Scholar in Clinical Research award, the Dystonia Coalition Career Development award, the Cincinnati Business Courier’s Forty Under 40 award, the Health Care Hero award, the Patients’ Choice and Compassionate Doctor awards, the Excellence in Mentoring award, and the Spanish Society of Neurology’s Cotzias award. With colleagues at the University of Cincinnati, he recently launched the first biomarker study of aging (CCBPstudy.com), designed to match people with neurodegenerative disorders to available therapies from which they are most biologically suitable to benefit, regardless of clinical diagnoses.
Rory Cellan-Jones has been a reporter for the BBC for thirty years, covering business and technology stories for much of that time. He joined the BBC as a researcher on Look North in 1981, moving to London to work as a producer in the TV Newsroom and on Newsnight. His on-screen career began as reporter for Wales Today in Cardiff, from where he moved to London as a reporter on Breakfast Time. He quickly transferred to business coverage, working across the BBC’s output from the Money Programme to Newsnight, from the Today programme to the Ten O Clock News. The stories he has covered range from Black Wednesday and the Maxwell trial to the dot com bubble and the rise of Google. At the beginning of 2007 he was appointed Technology Correspondent with a brief to expand the BBC’s coverage of the impact of the internet on business and society. His first big story was the unveiling of the iPhone by Steve Jobs in San Francisco. He now covers technology for television, radio and the BBC website. He also blogs regularly, and is a prolific tweeter – you can follow him at @ruskin147. In recent years he has investigated the role technology can play in improving the treatment of Parkinson’s Disease, having been diagnosed with the condition in 2019.
Join Parkinson’s advocate Carroll Siu, Associate Professor and Consultant Neurologist Dr Camille Carroll and Associate Director of Research Professor David Dexter as we move towards the future of clinical trials in Parkinson’s. We’ll be hearing about the challenges that face clinical trials in Parkinson’s and how pioneering new initiatives are looking to shake up how trials are done with the aim to increase their chances of success.
I am a person with Parkinson’s, diagnosed in 2015. I hold several voluntary role with Parkinson’s UK, such as chair of the Southeast of England Research Interest group, member of the Patient and Public Involvement Steering group, host for the First Steps programme for newly diagnosed persons with Parkinson’s.
I have a personal interest in research as I was a lecturer who taught research methodology to healthcare professionals at a higher education institution before I retired in 2009. Since retirement, I have keep abreast with research, particularly those related to neurodegenerative disorders by reviewing research articles with the BMJ, in my capacity as a patient reviewer.
I recently completed an eighteen month online course to train as a Patient Expert with the organisation European Patients’ Academy on Therapeutic Innovations (EUPATI).
Associate Professor and Consultant Neurologist, University of Plymouth
Dr Carroll is associate professor and consultant neurologist at University of Plymouth Faculty of Health. She is the national lead for neurodegeneration research for the Clinical Research Network, overseeing national clinical research capabilities and the development of a balanced clinical trial portfolio in neurodegenerative disorders, including Parkinson’s.
Dr Carroll leads Parkinson’s clinical research and the Parkinson’s disease (PD) service in Plymouth. She was the chief investigator of a multi-centre clinical trial of simvastatin as a neuroprotective agent in Parkinson’s disease (PD STAT). She co-leads the Edmond J Safra ACT-PD initiative, developing a multi-arm, multi-stage trial platform for neuroprotective interventions in Parkinson’s. Her research is focused on neuroprotection, and the use of digital health technologies for disease monitoring and personalized care in PD.
Associate Research Director, Parkinson’s UK
As Associate Research Director, David is head of Scientific Programmes at Parkinson’s UK. This includes management of the various grants programmes which are designed to accelerate research discoveries leading to better treatments and cures. David also manages strategic collaborative partnerships such as the Critical Path for Parkinson’s project and the EU Innovative Medicines Initiative. He also heads the AI initiative in subtyping newly diagnosed people with Parkinson’s to facilitate personalised care plans and more focused patient selection for clinical trials.
Technology can be of huge benefit to both research and healthcare professionals, and provides opportunities for people living with Parkinson’s to better understand their condition and take control. In this session we’ll hear about how people with Parkinson’s are shaping and steering the development of technology to better support them in their daily lives. We’ll be joined by Dr Rosie Morris from Northumbria University, who is working to develop an app alongside a patient advisory group. Two members of this group, Elaine Webster and Gerry Standerline, will share their experiences of being involved as co-investigators; and Dr Natasha Ratcliffe, Research Involvement Manager at Parkinson’s UK, will highlight the support Parkinson's UK can provide to researchers and people affected by Parkinson’s who wish to work together to shape and conduct research. Finally, Jeff Gould, who leads the Parkinson’s UK Apps and Devices Panel, will look at what technology is already available and where the future may take us.
Dr ROSIE MORRIS
Physiotherapist and Senior Lecturer, Sport, Exercise and Rehabilitation, Northumbria University
Dr Morris is a Physiotherapist and researcher who specialises in Parkinson’s. Dr Morris is based at Northumbria University and is an honorary clinic Physiotherapist at Northumbria Healthcare Trust. Dr Morris has research interests in observing mobility (gait, balance, and falls) and how it relates to cognitive function in people with Parkinson’s. Dr Morris’s research aims to improve rehabilitation by understanding the mechanisms behind
mobility and cognition as well as using novel technology to support rehabilitation.
Dr NATASHA RATCLIFFE
Research Involvement Manager, Parkinson’s UK
I’ve been working at Parkinson’s UK for 4 and a half years. In my role as Research Involvement Manager I support researchers and people affected by Parkinson’s to work together to improve research. People living with Parkinson’s day-to-day are experts in the
condition. It is so important that there are opportunities for people to share this expertise with researchers. People living with Parkinson’s should also be involved in deciding what research is done and how it is designed to ensure that it meets the needs of the Parkinson’s community.
In my role I support our network of patient and public involvement volunteers (‘PPI’ volunteers for short) to get involved in research across all stages — from setting priorities to helping researchers design studies and share their findings. I help researchers plan involvement activities and bring people together to talk about research. I am also interested in learning about different ways of doing patient and public involvement. It is important that
involvement is meaningful and has an impact for research and everyone involved.
Associate Director of Transformation & Culture, Parkinson’s UK
Jeff has been with Parkinson’s UK since January 2021 bringing almost 20 years of experience working in innovation for not-for-profit organisations. Formerly Head of Innovation at the RNLI, one of the UK’s biggest charities, he defined and led the role of innovation across lifesaving interventions, new technology and a diverse portfolio of funding including new commercial models. Jeff has also run his own strategy and innovation consultancy; worked for an innovation agency that promoted the arts as a solution to business challenges; and undertaken service design for a national mental illness charity.
Research Involvement volunteer
Co-Investigator with Dr Rosie Morris and Involvement Volunteer Gerry is 67 years old and was diagnosed with Parkinson’s 6 years ago. He has 3 adult offspring and 4 grandchildren, and has been married to Jane for 38 years. He has a BA in Politics from Leicester University and an MA in War Studies from London University. Gerry retired from his position of IT Manager when he was 59. He started in the computer industry in the early 1980s as a trainee programmer and worked for Next and Leeds City Council for most of his career. He managed teams of up to 100 people and led a number of large projects, including the Year 2000.
Research Involvement volunteer
Co-Investigator with Dr Rosie Morris and Involvement Volunteer Elaine worked in a range of education, training and outreach roles before retirement. She currently does voluntary work and is interested in the arts and culture.
In our final session of the conference, we’re gazing into a crystal ball to take a look at what Parkinson’s treatment and care may be available in future. Join Chair of the Parkinson’s UK Board of Trustees Gary Shaughnessy, Associate Director of the UK Parkinson’s Excellence Network Rowan Wathes and Professor of Clinical Neuroscience and Honorary Consultant in Neurology Roger Barker to hear their hopes on what the future has in store.
Chair of Board of Trustees, Parkinson’s UK
I was diagnosed with Parkinson's in 2015. I became a trustee of Parkinson’s UK in 2018, and then Chair of the Board in October 2019. I’m passionate about using my voice and experience to raise awareness of Parkinson’s, and improve life for people living with the condition. My career was in the insurance and financial services industry. I stepped down from my role as CEO of Europe, Middle East and Africa for Zurich Insurance in 2018. I wanted to spend more time with my family, on non-executive roles and my fitness. Exercise helps me manage my Parkinson’s symptoms. I enjoy combining sport with community engagement to raise funds and awareness for the charity. This has included wing walking, abseiling and running marathons.
Associate Director of the UK Parkinson’s Excellence Network, Parkinson’s UK
Dr Rowan Wathes is an experienced clinician-turned-manager, with a keen interest in healthcare strategy and transformation. She is the Associate Director of the UK Parkinson’s Excellence Network, a network for health and social care professionals interested in Parkinson’s and people affected by the condition. She is responsible for driving forward the charity's goal of ensuring that everyone with Parkinson’s has access to high quality multi-disciplinary care. She previously worked at The PSC (formerly known as 2020 Delivery), a specialist management consultancy dedicated to improving public services, where she led their work transforming complex healthcare services and organisations. Prior to this she was a Specialist Registrar in Clinical Oncology in North-West London. During her clinical training, she gained national policy experience as Clinical Fellow to Dr Kathy McLean, then Medical Director of the Trust Development Authority (now NHS Improvement), through the National Medical Director’s Clinical Fellow Scheme. Rowan holds a Master of Arts in Medical Sciences and a Bachelor of Medicine, Bachelor of Surgery from Oxford University. She is a Member of The Royal College of Physicians and has an HBX Credential of Readiness from Harvard Business School.
Professor of Clinical Neuroscience and Honorary Consultant in Neurology, University of Cambridge and Addenbrookes Hospital
Roger Barker is the Professor of Clinical Neuroscience at the University of Cambridge and Consultant Neurologist at the Addenbrooke’s Hospital Cambridge. He is a PI in the MRC-Wellcome Stem Cell Institute in Cambridge and Director of the MRC funded UKRMP Stem and Engineered cell hub. His research seeks to better define the clinical heterogeneity of two common neurodegenerative disorders of the CNS- namely Parkinson’s (PD) and Huntington’s disease (HD). This has helped him define the best way by which to take new therapies into the clinic including novel experimental therapeutics such as cell and gene therapies
- The Parkinson article: “Getting the most out of your medication review”
- The Parkinson article: “How to manage your medication”
- Research blog, “Why do Parkinson’s drugs cause dyskinesia?”
- Research blog, “How do levodopa medications work?”
- Research blog, “Starting Parkinson’s drugs—research explained”
- The Hope List resource (Dr Kevin McFarthing, Parkinson’s UK Oxford Branch)
- Parkinson’s Disease Drug Therapies in the Clinical Trial Pipeline: 2020
- Parkinson’s Disease Drug Therapies in the Clinical Trial Pipeline: 2021 Update
- Novel treatment example: Avanex 2-73
- Novel treatment example: Denali Phase 1 LRRK2 inhibitor
- Non drug treatment example: Bluerock therapeutics and cell transplantation
- Non drug treatment example: Adaptive Deep Brain Stimulation
- Science of Parkinson’s blog
- Take Part Hub
- Fox Trial Finder
- Research Support Network
- NIHR Be Part of Research Research blog series ‘Trials to treatments’
- Summary and handout - “What’s the gut got to do with Parkinson’s?”
- Online article - “Your gut microbiome may be linked to dementia, Parkinson’s disease and MS”
- Research blog, “What’s the gut got to do with Parkinson’s? Ask the expert”
- Richelle Flanagan’s presentation slides
- Irish Nutrition and Dietetic Institute advice, ”Eating well with Parkinson’s disease”
- The Michael J. Fox Foundation diet resource, “Parkinson’s Disease and Diet: A Practical Guide”
- Research blog, “Diet and Parkinson’s — research explained”
- Research blog, “Supplements for Parkinson’s — research explained”
- Research blog, “A probiotic for Parkinson’s?”
- Research blog, “Parkinson’s and protein — what’s the connection?”
- Parkinson’s UK website, information and support on Diet and nutrition
- Parkinson’s UK website, “Best practice guidelines for dietitians on the management of Parkinson's”
- PD Avengers
- Exercising at home toolkit
- Parkinson’s UK website, information on physical activity and exercise
- New infographic (published May 2021) on Exercise Recommendations for Parkinson’s
- Parkinson’s Exercise Framework
- The Parkinson article: “How can I motivate myself to exercise?”
- The Parkinson article: “If you have Parkinson's, keep moving”
- The Parkinson article: “Staying active at home when you have Parkinson’s”
- The Parkinson article: “6 ways to stay active - and stay motivated”
- The Parkinson article: “Exercise and advanced Parkinson's”
- Research blog, “Exercise in Parkinson’s: what’s best?”
- A resource for healthcare professionals, talking about physical activity with your patients
- European's Physiotherapy Guidelines for Parkinson’s Disease
- European's Physiotherapy Guidelines for Parkinson’s - for physiotherapists
- European's Physiotherapy Guidelines for Parkinson’s - for people with Parkinson's
- The Excellence Network Exercise Hub, for exercise providers
- Managing your exercise programme, Julie Jones presentation slides
- Davis Phinney Resources to help people live well with Parkinson’s
- Davis Phinney - Charting Your Course
- For healthcare professionals, the Parkinson’s UK Non-Motor Symptoms Questionnaire
- The Parkinson article: “Getting the most from a phone or video appointment”
- The Parkinson article: “Getting the most out of speech and language therapy”
- The Parkinson article: “Getting the most out of your medication review”
- The Parkinson article: “Getting the most out of occupational therapy”
- The Parkinson article: “Getting to know... a pharmacist”
- The Parkinson article: “Keeping a diary if your partner, friend or family member has Parkinson's”
- The Parkinson article: “Using a diary to monitor your Parkinson's”
- Questions to ask your Parkinson’s nurse
- Questions to ask my GP
- Take Part Hub
- Book: Parkinson's Disease: A Multidisciplinary Guide to Management
- Register for the UK Parkinson’s Excellence Network Conference 2021
- Campaign: Parkinson’s Related Dementia - Invite your MP
- Get involved: Parkinson’s UK Campaigns
- The Parkinson Secrets Blog, highlighted by Dr Indu Subramanian
- PMD Alliance wHolistic YouTube Channel with Dr Indu Subramanian
- Mobilise Care Online, for loved ones
- Parkinson’s Connect, our new support service
- Parkinson’s UK Newly Diagnosed Patient Pathway, for healthcare professionals
- The Parkinson article: “Managing your mental health during the pandemic when you have Parkinson's”
- The Parkinson article: “Getting to the root of anxiety”
- The Parkinson article: “What I wish I'd known when my loved one was diagnosed with Parkinson's”
- The Parkinson article: “Daily living hints and tips for Parkinson's”
- The Parkinson article: “Keeping a diary if your partner, friend or family member has Parkinson's”
- The Parkinson article: “Using a diary to monitor your Parkinson's”
- The Parkinson article: “Parkinson's and mental health during lockdown (VIDEO)
- The Parkinson article: “‘I have Parkinson's.’ How do you tell other people?”
- The Parkinson article: “How do you look after yourself if you look after someone with Parkinson’s?”
- Research article: “Mindfulness and Parkinson’s: Ask the Expert”
- Research article: “Anxiety and Parkinson’s: ask the expert”
- Davis Phinney - Charting Your Course
- Dr. Subramanian profile
- PMD Alliance
- Partners of People with Parkinson’s Facebook group
- Mobilise Community for Carers on Facebook
- Suzanne Bourne on LinkedIn
- Research blog, “Genetics and Parkinson’s: ask the expert”
- Parkinson's disease clinical subtypes: key features and clinical milestones by Campbell et al 2020
- The role of disease duration and severity on novel clinical subtypes of Parkinson's disease by Erro et al 2020
- Oxford Parkinson’s Disease Center
- Cincinnati Cohort Biomarker Program
- Parkinson’s UK - Improving clinical trials
- Research blog, “Big data — the key to unlocking Parkinson’s”
- Research blog, “Improving clinical trials to deliver better treatments”
- Discover opportunities to take part in research
- Read about the launch of the Edmond J. Safra Accelerating Clinical Treatments for Parkinson’s Disease project
- Science of Parkinson's blog: EJS-ACT-PD
- Parkinson’s UK - Apps and devices library
- Research blog, “Big data - the key to unlocking Parkinson’s”
- Research blog, “How artificial intelligence is speeding up drug discovery”
- Research blog, “Non-drug therapies - devices currently in clinical trials”
- Research blog, “Could a handheld device help reduce falls?”
- Dundee Research Interest Group video series, ‘Parkinson’s and Technology’ with a range of expert speakers
- Volunteer to help shape research - Patient and Public Involvement