The inescapable reality of fatigue
Sofie Layton’s artistic practice within the health setting explores the creative interface between patients and the scientific/clinical landscape, using a participative narrative process. She often creates installations and these projects include “Bedside Manners” 2012 at Evelina Children’s hospital and “Making the Invisible Visible” was created during her residency at Great Ormond Street Hospital (2015-2016) which focused on rare diseases (www.sofielayton.co.uk). “The Heart of the Matter” (2016-2018; www.insidetheheart.org) was a national public engagement project and exhibition which explored the medical, experiential and poetic dimensions of the heart – funded by Wellcome Trust , Arts Council England and The Blavatnik Family Foundation. She is in receipt of a LAHP scholarship and is pursuing a research by practice PhD at the Royal College of Art. The PhD is an artist’s investigation of illness and how it is experienced and understood; with the aim of bringing a new visual narrative and knowledge to the clinical setting.
Anna Kuppuswamy is a motor neurophysiologist and physiotherapist investigating the neurophysiology of affect. Her particular interests are in understanding the neurophysiological basis of pathological fatigue, specifically post-stroke fatigue. She completed her PhD at Imperial College London, and after a brief stint at National Institutes of Health in the US, she started her lab in 2016 at University College London. She is a Royal Society and Wellcome Trust Sir Henry Dale Fellow based at the Institute of Neurology, Queen Square, London. To answer some fundamental questions about the origins of post-stroke fatigue such as, why do some stroke survivors and not others suffer from fatigue? are there specific brain networks that contribute to fatigue?, her lab combines brain stimulation, brain imaging with behavioural techniques. Aside from her scientific work, she is passionate about public engagement activities to raise awareness about fatigue and understand the first-hand experience of stroke survivors.
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William De Doncker
William is a neuroscientist focused on post-stroke fatigue, working with Dr Kuppuswamy since 2016. His PhD (completed September 2021) aimed to identify the brain processes involved in fatigue after stroke. By identifying the mechanisms that drive chronic pathological fatigue, the team aims to develop potential interventions to reduce fatigue severity. Through working on the Ensnared project, William has gained further clarity and insight into his research practice and several avenues of focus for future research into fatigue post-stroke.
With over ten years’ experience in public engagement in research, Cassandra is the Public Engagement Manager at the Wellcome Centre for Human Neuroimaging, UCL. She oversees a broad programme of engagement initiatives focused on embedding public engagement into the research process. The Centreʼs engagement programme aims to empower people with neurological and psychiatric disorders to contribute to and influence neurological research and rehabilitation.
Siân has been working in public and community engagement with research for over 20 years. She works at intersections between academic disciplines and has a particular interest in the use of the arts and creative spaces to bring researchers and those outside of their research together. Siân is also a Wellcome doctoral student in the Centre for Global Studies at Sussex University. Her fieldwork, based in Kathmandu, Nepal, involved working with researchers, community and artists to explore water-born disease in the city.