As we mark the 20th anniversary of the Lewy Body Society, we are filled with profound gratitude, pride and hope. What began in 2006 as a small but determined effort to shine a light on a little-understood condition has grown into a recognised voice of support, advocacy and research for Lewy body dementia across the UK and beyond.
When Ashley founded the Society following her mother’s diagnosis of Lewy body dementia, there were few resources, limited awareness, and little understanding of the condition — even within parts of the medical profession. From those early days, the charity has been driven by a simple but powerful belief: that people affected by Lewy body dementia deserve recognition, understanding, and better outcomes.
The Lewy Body Society is the only charity in the UK – and the first in Europe – dedicated exclusively to Lewy body dementia, championing those affected and ensuring their voices are heard.
Over the past two decades, thanks to the commitment of supporters, volunteers, clinicians and researchers, that belief has translated into real progress.
We have been privileged to benefit from the support of remarkable advocates. For many years, the late June Brown OBE served as our Patron, helping to bring Lewy body dementia into public consciousness with honesty, warmth and determination. Her legacy continues to inspire our work.
Today, we are deeply grateful to have Rob Rinder MBE as our Patron. Rob’s openness, compassion and commitment to raising awareness of Lewy body dementia – shaped by his own family experience — have helped us reach new audiences and strengthen understanding of the realities faced by those living with the condition.
A cornerstone of our progress has been our close and enduring relationships with the academic and medical research community. In particular, we are proud of our long-standing links with leading academics and clinicians at Newcastle University and the University of Liverpool, whose work has been instrumental in advancing understanding of Lewy body dementia. Through these collaborations, alongside partnerships with researchers across the UK and internationally, we support research that improves diagnosis, informs clinical practice and moves us closer to effective treatments and better care.
We also want to extend our heartfelt thanks to the families, carers, people living with Lewy body dementia, healthcare professionals and supporters who have trusted us, shared their stories and shaped our work. Your experiences guide our priorities and remind us every day why this charity exists.
As we look ahead, our vision for the future is one of determination and hope:
Twenty years on, the Lewy Body Society remains committed to change – grounded in compassion, informed by science, and driven by the voices of those we serve. We are proud of how far we have come, deeply thankful to those who have supported us, and resolute in our belief that the next twenty years can bring even greater progress.
With gratitude and hope,
Jacqui Cannon
Chief Executive Officer
Lewy Body Society
Ashley Bayston
Founder and Chair
Lewy Body Society
