Experts & Collaborators
Find out more about the people and organizations working with the Quiet Soul Team.
Endorsements
Shannan Keen MBMSc
About Shannan Keen
Shannan Keen holds a BA in Psychology and Philosophy and a Master’s in Neuroscience from the Brain and Mind Research Institute, University of Sydney. Her research has focused on disorders of consciousness, with a particular interest in Locked-in Syndrome (LiS).​ In 2011, she founded the Australian Register for Disorders of Consciousness (ARDoC) at the Australian Brain Foundation, which she continues to lead today.
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Shannan is also the founder and host of the International LiS Conferences, held annually every June on Zoom. These gatherings bring together clinicians, researchers, technologists, families, and people living with LiS. Topics range from diagnosis and ethical care to communication technologies and global disparities in rehabilitation. Crucially, LiS individuals don’t just attend, they actively participate, presenting their own stories and experiences through assistive technologies like eye-tracking and spelling boards.
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In 2023, Shannan launched the LiSA Online Community Forum, a global space for people with LiS, families, therapists, and professionals to connect, share experiences, and support one another. Her commitment to amplifying lived experiences also extends to publishing. In 2024, she was commissioned by Routledge to write a book on LiS, featuring chapters written by twelve people living with the condition, alongside contributions from leading experts, including her former PhD supervisor, Professor Steven Laureys. Rather than medical case studies, the book presents deeply human stories of resilience, humour, and strength.
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Originally from Australia, Shannan divides her time between Sydney and England with her husband, Max. Through research, education, and advocacy, she continues to build global connections that drive change for people living with Locked-in Syndrome.
Why I Support The Quiet Soul
"Through the film,The Quiet Soul, I hope to bring LiS to a wider audience, enlightening people about this disorder. Whilst every case of LiS is unique, the film realistically depicts what it is like to become locked-in and how incredibly challenging it is both for the LiS person and for their family and friends to get to grips with, and adjust to, the enormous change in their lives.
I hope that this film might encourage people to choose neuroscience as a profession, to be inspired to study communication and assistive technology, to design brain/computer interfaces (BCI), to harness the power of Artificial Intelligence (AI) in aiding those living LiS, to enter the caring professions, to inspire systemic change in how we approach LIS on both medical and cultural levels.
As we will see in the longer feature film, with the right investment, hard work and focus, BCIs and AI can move us closer to a world where people with LiS not only communicate, they are able to take part more fully in social life, creative expression, education and employment.
I am hoping that, through this film, greater attention will be given to those who are vulnerable in our societies, through being locked-in or having another disabling brain disorder or injury. I am hoping that the light shone by this film will lead to improving their quality of life and give them freedoms of expression, communication and ability to live meaningful and valued lives.
Silence is said to be powerful. However, in the case of Locked-In Syndrome, that silence has lasted too long. The power of this film, The Quiet Soul, will show us that we must listen harder, we must work to build better tools and to create a world that no longer mistakes silence for lack of awareness or abilities or intelligence. We must ensure that those with LiS or brain disorders are not silenced, that they are each given the means to express what lies in the depths of their 'quiet souls'."
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- Shannan Keen, MBMSc