We are excited to announce the third annual Locked-in Syndrome International Conference. It will take place on Monday June 10th, 2024.

The event is free and will be held on Zoom. Researchers from across the world will present international developments in the field of LIS treatments, which can support patients and attempt to ‘unlock’ the locked in. You can register via the link below. The presentations will be recorded and all registrants will receive a link to view the recording after the event.

https://online.forms.app/shannankeen/liswebinar2024registration-form 

Locked-in syndrome is a rare neurological disorder in which patients are unable to move anything except their eyes, despite being fully conscious. It is an incredibly disabling and isolating condition. The problem is that fellow sufferers are spread around the world and independent travel is out of question, so always having to be accompanied by a carer makes the costs of travel prohibitive.

The Locked-in Syndrome International Conference is an opportunity to meet fellow patients and learn about new assistive technologies and treatments. You can see the full schedule of presentations below. Below the schedule, you can read a brief bio for each speaker, and further details about the presentations.

Locked-in Syndrome International Conference – Schedule

• 9.30 am – Welcome and introduction by Hosts (Shannan and Bouke)
• 9.40 am – LiS Dick van de Heijde
• 10.00 am – Coralie Graham; Stroke research (Brisbane)
• 10.30 am – LiS Nelleke for her son, Tars
• 10.50 am – Fernando Vidal – Phenomenology living LiS (Catalonia)
• 11.20 am – LiS Paqui Villegas
• 11.40 am – Helle or Jane – Norwegian Sunnaas Centre for LiS
• 12.10pm – Feedback and Discussion of morning Presentations
• 12.20 – 1.10pm – Lunch break (50 minutes); talk on Communication options from no-tech to high-tech with speech pathologist, James Brinton
• 1.10 pm – Welcome back by Hosts
• 1.20 pm – Frank Becker and Helle – Research at Sunnaas (Norway)
• 1.50 pm – David Moses – Brain/Computer Interface (California)
• 2.20 pm – LiS Ann Johnson
• 2.40 pm – Marie Christine Nizzi – Subjective life for LiS (USA)
• 3.10 pm – Open Discussion with Hosts and farewell ’til next year

All times are in BST (UTC+1). If you would like to join the LiSA Community Forum, you can join the Facebook group here >

Speaker Bios & Presentation Details

Shannan Keen (Host)

I am Shannan, the founder of these International LiS Webinars. I hold a BA in Psychology and Philosophy and a Masters in Neuroscience. In 2011, I founded and continue to run the Australian Register for Disorders of Consciousness (ARDoC) at the Brain Foundation. My neuroscience work and PhD was halted in 2013 when I developed bacterial meningitis from which I am still recovering. In early 2023, I launched the LiSA online Community Forum (on Facebook). I’m Australian and am happily married to my husband, Max. We live part of each year in Sydney and part of each year in England.

Bouke J van Balen (Co-Host)

Bouke is a PhD candidate in Ethics and Philosophy at the University Medical Centre Utrecht, TU Eindhoven, and TU Delft. He researches how communication Brain Computer Interfaces (cBCIs) can and should shape the lived experience of people with Locked In Syndrome, their caregivers, and the medical practice around them. He interviews people with LIS, their caregivers, and medical professionals to study their experiences of communication, well-being, and personhood. These experiences form the basis of his philosophical analysis and ethical recommendations. Bouke lives in Amsterdam.

Dick van der Heijde

Bio: Dick is one of the longest-living individuals with Locked-In Syndrome. This year marks his 33rd year in this condition, making him a true veteran. In 1991, at the age of 28, Dick suffered a brainstem stroke due to a hereditary high cholesterol level. This event resulted in Locked-In Syndrome, along with all its implications. Dick resides alone in a typical row house with an attached bedroom. He shares his living space with his care team, who tend to all aspects of his life, from computer work to medical procedures such as suctioning his airways but also managing laundry and doing a lot of communication with him.

Presentation: In this mini-documentary, we follow a day in his life. Special attention is given to the music used, as it all originates from the band Dick played in during the eighties.

Prof Coralie Graham

Bio: Coralie is an Associate Professor in the School of Nursing & Midwifery at the University of Southern Queensland (USQ). She is dually registered as a Registered Nurse and Psychologist and has worked in a number of roles in both of these professional capacities. Coralie’s research interests include equity (Ramsden’s Cultural Safety model), and treatments for chronic neuro-injury and stroke.

Presentation: Ensuring that all people in health care are treated individually and without bias defines cultural safety. In recognition of this, Australia’s Health Practitioner Regulation Agency (AHPRA) has mandated that all regulated health practitioners are required to complete cultural safety training. Recognising that people with a disability are people – with the same individual needs as everyone, who need to be treated and communicated with, without bias – is what culture safety is about.

Nelleke and Tars’ Koeners

Bio: I am Nelleke Koeners, born in the Netherlands, but I have been living in Belgium since I was 7 years old. I am the mother of Tars Peeters. Tars was born on 26/07/92. His big dream was to become a chef. Since he was 12 years old, he attended culinary school. When he had just turned 18, he pursued a specialisation in global cuisine. On 26th September 2010, he got into a car with a friend who didn’t have a valid driver’s license and had a crash. Due to the accident, Tars fell into a coma. After a long battle with the doctors at the facility where Tars was staying, I ended up at Professor Steven Laureys’ Coma Science Centre in Liege, Belgium, two years after the accident. Steven diagnosed Tars as a patient with LiS. Since that day, we have been doing everything we can to help Tars move forward.

Presentation: What I want to say is that as a mother, you must always follow your own instincts. You know your child (in my case) the best, and I strongly felt that Tars was trying to communicate with us but didn’t know how. My whole life has changed, but mostly in a positive way. Tars has given me a new perspective following that accident in 2010, and despite everything that comes our way, we continue to believe in Tars’ strength.

A/Prof Fernando Vidal

Bio: Research Professor of ICREA (Catalan Institution for Research and Advanced Studies) and Professor, Medical Anthropology Research Center, Department of Anthropology, Rovira i Virgili University, Tarragona, Spain. After a long trajectory as an intellectual historian, he moved into medical anthropology and phenomenology. His research in this area explores how the disorders of consciousness (the unresponsive wakefulness syndrome, formerly known as the vegetative state, and the minimally conscious state), as well as conditions that symptomatologically affect primarily the mind (the dementias) or the body (locked-in syndrome) affect personal identity, personhood, relationality and subjectivity.

Presentation: Fernando will present work done within the “Anthropology and Phenomenology of LIS” Project, a multidisciplinary and international collaboration that includes research groups, medical institutions, and associations from Spain, France, and Japan. The purpose of the project is to describe and study the life of persons with LIS. It focuses on the subjective and intersubjective aspects of their experience, comparing them along two dimensions: between cultures; and between persons who entered the locked-in state suddenly, due to stroke, and persons (mainly affected by ALS) who entered the locked-in state gradually.

Paqui Villegas

Bio: I am 54 years old and I live in Almería, Spain. In 2008, at 39 years old, I spent a week with migraines, with severe pain on the back of my neck. The doctor told me it was torticollis, a relatively common neck problem that causes the neck to twist and feel strained, and sent me to rest. Later I had a stroke and, a month later, I was diagnosed with Locked-in Syndrome.

Presentation: Thanks to my effort and desire to improve, I have been awakening my body. It all started when they gave me the book “The Secret”, where I began to believe in the power of the mind and started to work on myself. Today I feel very happy with everything I have achieved physically and mentally, communicating and improving in my own time, incredible, but true. I’m living a dream I don’t want to wake up from.

Helle and Jane; Norwegian LiS Centre

Jane Svartskuren has been the coordinator for the Norwegian National Unit for Rehabilitation of Locked-In Syndrome (NoRLIS) since 2017. She is an AAC (Augmentative and alternative communication) special education teacher. She has experience from various areas including AAC product management and development (Scandinavia, UK, Holland and more), Technical Aid Center, adult education and schools.

Helle Walseth Nilsen is a physician (specialist in rehabilitation medicine) working at Sunnaas Rehabilitation Hospital in Norway and in NoRLIS since 2015. She is currently writing her doctoral thesis “How I live my Locked-in Life” based on the Norwegian LIS patient population, partly using registry data from NoRLIS.

Presentation: The Norwegian National Unit for Rehabilitation of Locked-In Syndrome Introduction to the Norwegian System for Treatment and Follow-Up of Locked-In Syndrome (LIS) Patients: In Norway, it is mandatory for all hospitals to refer patients diagnosed with Locked-In Syndrome (LIS) to the Norwegian National Unit for Rehabilitation of Locked-In Syndrome (NoRLIS) at Sunnaas Rehabilitation hospital. NoRLIS provides interdisciplinary assessment at the acute ward, subacute inpatient rehabilitation, lifelong annual follow-up visits at patients’ homes, as well as outpatient evaluation or shorter inpatient stays, if required. Implementation of Augmentative and Alternative Communication (AAC) devices varies according to the unique needs, capabilities and environment affecting each individual, necessitating adjustments and reassessments over time. NoRLIS provides counseling and guidance for the patient, family members, and relevant professional groups as needed. NoRLIS has tasks related to knowledge dissemination, quality assurance, and research. All people with LIS in Norway are entitled to cost-free treatment and rehabilitation both in hospitals and municipalities. All technical aids – including AAC devices – are funded by the government.

A/Prof Frank Becker

Bio: A/Prof Frank Becker is a clinician and researcher who has worked with neurorehabilitation for 25 years, especially with rehabilitation for patients with acquired brain injury. He is clinical medical director at the Sunnaas Rehabilitation Hospital in Norway and professor in physical and rehabilitation medicine at the University of Oslo. Becker heads the National Unit for Rehabilitation of Locked-in Syndrome located at Sunnaas Rehabilitation Hospital.

Presentation: “How I live my Locked-in Life“ – an ongoing research project about Locked-In Syndrome in Norway. With the Norwegian National Unit for Rehabilitation of Locked-in Syndrome as the starting point, this ongoing study seeks to provide a better understanding of health, participation, self-reported autonomy and quality of life in patients with locked-in syndrome. In the first part of the study, we have explored the demographic and medical characteristics of the Norwegian LIS population. The results from this study (published in Neurology) will be shortly presented. In an ongoing second sub study we investigate what everyday life is like for patients with locked-in syndrome in Norway; also this study uses data from the quality register of the national unit, and some preliminary results will be presented. The final part of our project regards the following question: How do Norwegian patients with locked-in syndrome perceive their autonomy, and is their level of autonomy linked to quality of life and levels of activity and participation? Here, we will shortly introduce the aims and methods of this study that will start later this year.

A/Prof David Moses

Bio: A/Prof David Moses is a brain-computer-interface researcher within the Edward Chang lab at UCSF. He first joined the lab over ten years ago as a PhD student developing approaches to decode words and sentences from brain activity in real time. After graduating, he stayed on as a postdoctoral scholar in the lab, where he led multiple projects as part of the BRAVO clinical trial to decode intended speech from the brain activity of individuals with severe paralysis as they attempted to speak. Now as an adjunct professor, he continues to manage and coordinate cutting-edge research projects aimed at restoring expressive and embodying communication to persons who are unable to speak.

Presentation: Patients living with locked-in syndrome struggle to communicate due to their physical disability, despite their desire and mental capacity to express themselves. Existing assistive-communication technology can restore meaningful communication to these patients, but these devices are often slow and unnatural to use. In the Chang lab at UCSF, we are developing a “speech neuroprosthesis,” which is a system that uses advanced neural implants and machine learning to translate neural activity into a user’s intended speech. In this presentation, I will introduce the scientific background behind this technology, describe our proof-of-concept system, and then showcase more recent developments of our technology. In general, speech neuroprostheses offer a potential avenue towards restoring rapid, naturalistic communication and expression to persons with locked-in syndrome.

Ann Johnson

Bio: I live in Regina, Saskatchewan, Canada. In February of 2005, I had a Vertebral Dissection which led to a brainstem stroke. At the time I was 30, I had a 13 month-old daughter, an 8 year-old step-son and a 26 month-old marriage. Since 2006 I’ve lived at home with my family. My goal was to watch my kids grow-up. My step son is 27 and my daughter is 20. Three years ago I volunteered to do a research study with the Chang Lab in San Francisco, California, USA. I lived there for 18 months but I got an infection and had to drop out of the study.

Presentation: Ann will be discussing the implant and speech synthesis that was achieved with her by David Moses and the team who gave his presentation prior to our break today. She will show a video about the study. This video received an international award. Ann also hopes to show us a short video about her house adaptations.

Esther Kruitwagen

Bio: After studying medicine, Esther Kruitwagen was trained as a rehabilitation physician in the Utrecht rehabilitation medicine network (the Netherlands). After her training, she first worked in the De Hoogstraat rehabilitation center with a focus on neurorehabilitation. Since 2006 she has worked at the UMC Utrecht and specialized in care for adult patients with a muscle disease, with special attention first to patients with ALS and later also to adults with SMA. Her research focuses on the quality of life and social participation of people with a muscular disease, in particular ALS and adults with SMA. She is the coordinator of the national care network for ALS. In this role, she is involved in research and implementation of eHealth, educational material and guidelines for chronic ventilation. These projects are focused on people with muscular diseases, loved ones, children, and medical professionals. She regularly gives lectures.

Presentation: Esther’s talk will focus on quality of life and care for people with locked-in syndrome. She will speak from her experiences as a physician and researcher.