Our History

Our Story

We were the first charity in Europe to focus exclusively on Lewy body dementia. Our mission then remains what drives us today – to raise awareness of Lewy body dementia and to fund research to better understand the disease.

The Lewy Body Society was founded in 2006 by AB, who was a practising barrister at the time, now our chair. While caring for her recently diagnosed mum, she was shocked to discover how little information about Lewy body dementia was available. 

When it became clear no-one was trying to raise awareness of this disease with such unique symptoms and so few treatment options, Ashley began contacting experts in the field herself. 

We launched as an official charity in June 2006 

The much-loved actress June Brown OBE, who played Dot Cotton in Eastenders, agreed to be our Patron and she was a fantastic LBS advocate right up until her death in 2022. It was a cause close to her heart as her late husband Robert Arnold had lived with Lewy body dementia. Our annual “Dotty Days” awareness week is named in her honour. 

 In 2022, we launched, and are the host organisation for, Lewy body International which brings together organisations working to raise awareness and support Lewy body dementia globally.