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The Lewy Body Society’s mission and impact

Jacqui Cannon, CEO of The Lewy Body Society, discusses the work done by The Lewy Body Society, highlighting the charity’s key aims, including promoting awareness, supporting research, and collaborating with organizations to improve the lives of those affected by the disease. This interview was recorded on a virtual conference call with VJDementia.

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Transcript

So we are 20 years old this year as a charity. We were founded in 2003. We’re very much an information-driven charity providing people with information so that they feel equipped to go and talk to their doctors about it and we really encourage people to take part in research. That is one of our key aims. And because there are so many people, they don’t have research discussed with them...

So we are 20 years old this year as a charity. We were founded in 2003. We’re very much an information-driven charity providing people with information so that they feel equipped to go and talk to their doctors about it and we really encourage people to take part in research. That is one of our key aims. And because there are so many people, they don’t have research discussed with them. So in all our information packs that we send out, we always put information in about research, what’s the latest research that’s available that they can take part in. We work in partnership with Dementia UK, which is an organisation of Admiral Nurses to provide support to people and we promote awareness of Lewy Body Dementia. We take our campaigns to Parliament. In January, we are now the Secretariat for Lewy Body International. We work with 11 other countries and we were the founder of Lewy Body International. We promote awareness and generally we have now a World Lewy Body Day, which is on the 28th of January every year. This year was our second World Lewy Body Day and every year it’s grown, especially across social media, where we’ve hit like a quarter of a million, half a million views of some of our postings. And it’s all just about getting out the word about Lewy Body Dementia and Dementia with Lewy Bodies. So we are a member of AMRC, which is the Association of Medical Research Charities, and we fund research across UK universities. And some of the things that we’ve funded over the last 20 years as a charity are looking at scanning and the scanning tools and the different scans that can be used, biobank data and inflammation as well, which is another key thing for dementia with Lewy bodies: what do those signs in the body of inflammation mean and how will that inflammation react and how can we best deal with it and help people to live the best life that they can once they get a diagnosis.

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