Locked-in syndrome is a rare condition. There are relatively few people – fortunately – with locked-in syndrome. Likewise, there are also relatively few experts on this condition. So it is important that patients and professionals who work with people with LIS are vocal and know each other.
The current webinar was initiated by Dawn Faizey Webster (LIS patient in the UK and well known after her TEDx Talk on LIS), Tracey Gibb (LIS patient in Australia, disability activist) and Shannan Keen (Founder Australian Register for Disorders of Consciousness). The three of them searched and found several people in the field of LIS throughout the world and asked them to give a presentation at the webinar. Mariska Vansteensel (Assistant Professor at the University Medical Center of Utrecht) and Femke Nijboer (Assistant Professor at the University of Twente) later joined in to help organize a conference in the form of an online webinar. We are hoping to make this an annual or biannual event.
The aim of the first webinar is to give an overview of some big topics related to LIS; clinical prognosis and therapy, quality of life and living with chronic LIS, existing assistive technology, technological innovations from the field of neuroscience.
In addition, we want to make sure that people with experience and knowledge on LIS can more easily find one another. To this end, we encourage you all to make use of the chat function to network and make yourself visible.
Finally, it would be nice if the first webinar on LIS ever was not the last. Together with you we’d like to talk about how to repeat this symposium annually or biannually in order to maintain momentum for our aims.
We hope to welcome you on the 13th of June to the online webinar.
How do you join?
● Sign up here.
● You will receive a link to a Zoom meeting