The Lewy Body Society celebrated World Lewy Body Day 2026, Wednesday 28 January, with a landmark event in Parliament.
Held during the new Lewy Body Awareness Week, the Westminster reception brought together parliamentarians, clinicians, researchers, people with lived experience, supporters and partners to highlight the urgent need for better recognition, diagnosis and care for people affected by Lewy body dementia.
Jacqui Cannon, Chief Executive of the Lewy Body Society, said: “Reaching our 20th anniversary is an opportunity to look ahead as well as reflect. Too many people affected by Lewy body dementia still struggle to be recognised and understood, and events like this are about pushing that conversation forward.”
Guests were addressed by charity patron Rob Rinder, medical researcher Dr Paul Donaghy, LBS ambassadors Emma Cunniffe and Vicky Hands, and Newcastle upon Tyne Central and West MP Chi Onwurah, reflected on the impact of the Lewy Body Society over the past two decades, the importance of partnership working across research, healthcare and policy, and the need to continue building hope for people affected by Lewy body dementia.
Author, TV presenter and barrister Rob Rinder spoke movingly about the challenges of diagnosis and the need for greater research and support for families affected by Lewy body dementia.
“I hope you’ll forgive me for being a little bit moved, like many in this room, whose lives and families have been touched by Lewy body dementia,” he said. “It is perhaps one of the most challenging things, impossible to describe. It is a disease wrapped in an enigma. It’s watching your loved one walk beyond the fog, beyond reachable distance, laced in the limitless emotional frustration of not having any answers. But what gives us the currency to go on? It is the Lewy Body Society.”
Dr Paul Donaghy said: “There are many people in this room whose research has benefited from the Lewy Body Society, and there are researchers in the country who are contributing a lot to Lewy body disease, who got their first start through Lewy Body Society PhD studentships. It has been a brilliant contribution. I am really grateful to the Society, and also all its donors.”
“The research, and the funding for research, is so important, and I want to wish the Lewy Body Society at least two more decades of successful and excellent work,” added Chi Onwurah MP.
Jacqui Cannon said the milestone year was an important opportunity to push for change: “For many families, the hardest part is not just the diagnosis, but the long road to getting there. People are too often told they have something else, or that what they are experiencing is ‘just ageing’. We know that earlier, accurate diagnosis can change lives, and awareness is the first step in making that happen.”
The Westminster event was followed by an evening reception at a central London private members club, where the Lewy Body Society’s new film was premiered, launching the dementia charity’s 20th anniversary year on a high note.
Throughout Lewy Body Awareness Week, supporters were encouraged to take part in Lewy Body Awareness Week, running from 26 January to 1 February, by “connecting the dots” and wearing spots to help spark conversations about the condition.
“Together, we can make sure more people recognise the symptoms, receive the right diagnosis and get the care and support they need,” said Jacqui.
See Rob Rinder and our ambassadors address the Westminster event.
