By Jacqui Cannon, CEO, Lewy Body Society

Published: 17 August 2018

In my previous professional life, I was a Senior Business Analyst and my responsibilities and position were clearly defined.  As CEO and sole paid staff of the Lewy Body Society (LBS), my roles and duties are wide-ranging from admin to public appearances.  I am not a medical professional, scientist or researcher but I am an “expert by experience”. For many years I cared for my beloved father, who had DLB, and my commitment to the Society’s mission is total.

For those of you who don’t know Dementia with Lewy Bodies (DLB) is the second most common form of age related dementia after Alzheimer’s, accounting for 15-20% of all people with dementia. It has symptoms similar to both Parkinson’s and Alzheimer’s diseases as well as hallucinations and extreme fluctuations of consciousness. The Lewy Body Society was founded in 2006 to support research into DLB and to raise awareness of it by educating the public, the medical profession and those in decision-making positions and now it is my job to lead it.

Mission possible

The Society’s mission is two-fold and information driven, research and awareness and my work involves facilitating both. My working life is a whirlwind of activity.

Spreading awareness of Dementia with Lewy Bodies

I am often asked to deliver awareness sessions about DLB. I have made presentations to practice nurses, Council staff, carers’ groups and hospices.

The presentation included the charity’s video, introduced by Natasha Kaplinsky, which was produced by ITN Productions last year for the NHS Alliance.

I fly the LBS flag as Vice Chair of the Wigan Dementia Action Alliance and as Greater Manchester Champion for Join Dementia Research.

Meanwhile, back at the desk…


Call for grant applications 2018

Over the last few weeks I have been dealing with questions to the charity regarding our first call for grant applications as an AMRC member and preparing for the Specialist Advisory Committee to meet and organise the independent review of the applications received.   

One thing that you won’t find me doing is fundraising. I happily thank contributors on behalf of the trustees and give grateful encouragement – and often running vests – to the kind people who raise money for the charity. The Society never solicits contributions and donors are never asked for more.

Website and social media

By the time you read this, the LBS will have engaged the services of a part-time proper PR, who will probably tell me I have this blog wrong, to publicise the work of the charity and look after our and Twitter and Facebook accounts. Currently I manage these activities with the help of the founder/chair of the trustees, Ashley Bayston, from whom I was passed the Handbag of Office of CEO. Neither of us are good at delegating - and are very tight with donors’ money - but in this age of instant communications, professional expertise is essential.

I am also responsible for updating the website content. Even though I come from an I.T. background I have developed new web skills whilst working with the charity.


A typical day can involve me speaking to a number of carers over the telephone. I find that they value speaking to someone who has the lived experience. In order to understand fully the challenges and complexities of DLB, you really have to have lived with it. Though carer support is not strictly within the remit – we feel that we provide support by providing information to carers - the Society makes people affected by DLB feel validated in a way no other organisation possibly can.


As I am based in the North West of England I do enjoy and value my trips to London and try to pack as much into each visit that I can.  Recently I attended the launch of the APPG on Dementia and Disability and the society will be providing evidence on the challenges faced by people living with DLB.  As a small charity the opportunity to attend such events is greatly valued.  I also took the opportunity to catch-up with one of our ambassadors Conor McGinn MP and as always, we thank Conor for his continued support.  We look forward to holding a drop-in session for MPs at Portcullis House in November, thank you to Conor and his staff for arranging this event.

So, what does the CEO of a small charity do? The short answer is everything and I love every minute!