From our website to our growing community, 2024 was a year in which our shared vision of a nationwide support network really started to take shape.
When we first combined our efforts, we had a clear vision of how we wanted to approach the challenge of providing support to people affected by Lewy body dementia. First and foremost, it had to be meaningful, so it needed to be grounded in lived experience. Second, we wanted to make our community central to what we do. ‘Here for each other’ is more than just a catchy motto - it means we’re all in this together, and that we believe our greatest strength is the support, advice and understanding we can give to one another. This has been a year where we’ve laid the groundwork for future growth and expansion of our support services. We launched the Buddy Directory one year ago, and introduced the ‘What worked for me’ concept of tips and articles (Esther was delighted that the benefits of rapid cycling for people with LBD were recognised in 2024 in the UK, as this significantly improved and extended the quality of her husband's life). We have also started to explore the benefits of creating small peer support groups on WhatsApp for people with particular shared experiences, such as men caring for their wives at home. Self-funded on a shoestring and entirely volunteer-led, we’re proud of what we’ve been able to achieve this past 12 months. With our formal registration with the Charity Commission on the horizon, there’s so much more we’re hoping to achieve in order to reach more people whose lives have been altered by this condition. At what can be a difficult time of year for so many, we wish you the very best and a reminder with kindness, that we will continue our work to support you and be here for you when you need it. Best wishes, Esther & Richard Co-founders, Lewy Buddies UK 
Since we started out, I wanted this organisation to be genuinely led by the people it aims to help. And until now, despite extremely limited time and resources, we’ve been able to do that in some small way. However, Esther and I feel that if we are to really start delivering on our aims, the time has come to make some notable changes.
Registering as a charityWe believe it’s time to take the next step and formally register as a charity with the Charity Commission. But we can’t do it alone. We need trustees – and as much as possible would like them to be members of our community with lived experience of lewy body disorder.
What we’re looking for:
If you’re interested and can tick one or more of the boxes above, we’d love to hear from you. Please email us to discuss this in more detail and we can answer any questions you might have. Reimagining our 'buddy' serviceFrom the number of you signing up requesting to talk or meet with other ‘buddies’, we know there is demand for a peer support service. But we don’t want it to be necessary for you to wait for us to manually pair you with other members in similar situations or within a local area. We want to give you control of who you contact, talk to and meet. Because of this, we would like to trial an alternative model of peer support between members – or ‘buddies’ – through a secure online platform. To pilot this effectively, we need as many of you to tell us of your willingness to take part. If enough of you are interested, we’ll then provide you all with more information before you make a final decision. If, after the trial we find the system is working, we’ll then make it fully accessible to new members. Our hope is this will make peer support services more sustainable for everyone, and enable us to invest more time in developing other types of support such as funding for counselling and legal support. If you’re interested in trialling a new buddy platform, please email us and we’ll be in touch with more information once we have enough people on board. Thank you. 
As all of you who subscribe to our mailing list will already know, we've been working on getting a calendar online for any key dates that you should know about.
We'll still try and get email reminders sent out, but as our recent faux-pas with dates shows, with just two of us running this on a volunteer basis, we don't always have the capacity we'd like to. So we're very happy to let you know our online calendar is now up and running. You can add any of the events listed to your own online calendar by clicking on any of the events and then clicking on "copy to my calendar". Click on "more details" for more information, along with any relevant links you might need. It might look a bit empty at the moment, but we'll be adding to it with any useful events from charities or other organisations that we think could be relevant to you. If you spot a mistake, please do let us know as there are bound to be some teething problems. Equally, if you know of any events going on that you think we should add to the calendar, get in touch. 
It's taken a little while, but this summer we're finally at the point where we'll begin introducing our members to one another in the hope that they can become 'Lewy Buddies' and provide each other with support.
Our 'Lewy buddies' model of peer support is one of the key ways we aim to help people affected by Lewy body disorder and their families. It's also one of the things that stood out in our 2022 Facebook survey as something people wanted. 68% said in-person support groups or meetings would be helpful, and 62% told us online meetings would be beneficial. To understand a bit more about why we're doing this, look no further than Esther Boyd's 'What worked for me: Finding a buddy' for a first-hand account of the difference it can make to have someone nearby who understands what you are going through. We've currently over 100 members, with more joining all the time. If you're interested in finding out if anyone with experience of Lewy body disorder lives close to you, simply sign up here and provide your postcode to be added to our database. Everyone who has provided their postcode and email will first be contacted by us to let them know if there are people within a reasonable distance of them, and to check they are happy for us to make an introduction. Some of you may be happy to meet, while others may prefer a phone or video call. We'll take all of this into account and do our best to connect you with 'buddies' in similar situations. We kindly ask that you please bear with us. There's only two of us working on a volunteer basis, but we'll do our best to start putting you in touch with one another as soon as we can. |
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