The Lewy Body Society looks ahead to 2021

Here at the Lewy Body Society, we’ve been looking forward to 2021 for a while. That’s because it will be our 15th ‘birthday’ as a charity.  We remain the only UK charity dedicated exclusively to Lewy body dementia, and we will mark the year with an impact report and a new fundraising appeal to help us move to the next phase in our mission to raise awareness and support research into the disease.

We look forward to sharing details very soon, but we also thought it was worth reflecting on 2020 and some of our achievements in what has been a very difficult year for everyone. Our thoughts are with everyone who lost a loved-one last year. The COVID-19 pandemic has been particularly devastating for people living with dementia and their carers.

In some respects, the pandemic did not alter our way of working as an organisation. We are a small charity and don’t have a physical office, and our small team of contractors already worked from home. Even though we have been affected by cancelled events and the resultant loss of fundraising income, we were able to go ahead with our planned grant application over the summer. Following a thorough review of the applications, our specialist advisory committee decided to award five grants and we will share details of the exciting projects very soon.

However, the national lockdowns and the huge rise in isolation and lack of access to physical support services meant we quickly recognised the need to innovate in the way we engage and support people affected by Lewy body dementia. We did this by starting a series of online events via Zoom aimed at people living with dementia, carers and professionals. These have been very well attended and the feedback has been excellent, so they will continue in 2021.  The recordings of the sessions are available as support videos for future viewing via our YouTube channel. We also attended various online conferences and started a new email newsletter to keep supporters informed about our work.

Our annual awareness week Dotty Days went ahead in June, and we were so impressed at the creativity shown by everyone who joined in to raise awareness and undertake fundraising initiatives. Lots of people held virtual coffee mornings and shared a brew with friends or colleagues to raise awareness.

Over the course of the year we welcomed three new Ambassadors in Chris Leek, Chris Maddocks and John O’Brien.   All have played a big role this year in promoting the charity and ensuring that our work is grounded in the lived experience of people directly affected by Lewy body dementia.  Our other Ambassadors Ken Clasper, Conor McGinn MP and Les Magee have all continued to support us, with special thanks to Les for organising the incredible Carols from Drenagh concert in December. The event was a lovely way to end the year by bringing people together, and raised over £2000 for the Lewy Body Society and Foyle Hospice.

There have been so many amazing fundraising efforts this year, and we are grateful to everyone who took part in an event or made a donation.  You will make a real difference to people affected by Lewy body dementia. Some of the highlights were Emma Leek and Laura Dobie running the Virtual London Marathon, Aquaseal Rubber Ltd donating over £3000 in memory of the company’s founder Eddie Armstrong, and this three-generation 69 mile cycle which raised over £1500. The year ended with a very cold looking swim in Exmouth and an incredible donation of around £60,000 by professional poker player Lex Veldhuis and PokerStars website.

We would like to wish all our supporters a happy and safe new year, and we look forward to continuing our efforts to raise awareness Lewy body dementia and support research in 2021.