How we want to move forward, together

​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 charity

​We 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:
 

• Lived experience of LBD
• Finance / Accountancy background
• Previous Trustee experience

 
If you’re interested and can tick one or more of the boxes above, we’d love to hear from you. Please email [email protected] to discuss this in more detail and we can answer any questions you might have. 

Reimagining our 'buddy' service

​From 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 [email protected] and we’ll be in touch with more information once we have enough people on board.
Thank you.