04/06/2026
Imagine you are fully conscious, awake, and capable of thinking, but you can't move any part of your body except your eyes.
This is the reality of Locked-In Syndrome (LiS) - a rare neurological disorder resulting from damage to the pons (brainstem).
Shannan Keen is a neuroscientist and LiS manager at the Brain Foundation. This article in The Australian features two stories of real people living with LiS and insights from Shannan's decades-long experience in the field - bringing light to a rare and isolating condition.
In 2012, Shannan established the Australian Register for Disorders of Consciousness (ARDoC) to serve patients with severe consciousness impairments, including coma, vegetative states, and LiS.
In 2022, she established an annual LiS conference. An international event that brings together leading specialists, researchers, and patients. The 2026 event is coming up soon, on June 8th. It is free and held on Zoom. Find out more information at the link in the comments.
Those with locked-in syndrome have fully active minds but cannot move or speak. A Sydney University researcher has helped some to tell their stories: https://bit.ly/4a0ZifI