Please help us!
Most of you know that after several years as Chair, Shelagh has stood down from our committee. Although we are really lucky to have quite a few other committee members, we urgently need to re-think and re-group the committee. We didn’t have an AGM this year due to illness, work commitments and family issues so officially all the remaining committee members are serving in an interim role only and we really need to organise an AGM and get the committee back on track.
We need your help – many hands make light work and we would welcome additional committee members in any role. The workload isn’t huge – we mostly communicate by email and phone so it’s not a case of constant meetings etc.
A few of our supporters have indicated that they would be willing to help, so what we would like to do is have a very informal get together with anyone willing to become involved – whether it be in an ‘Officer’ role, helping with the newsletter, awareness raising, acting as a point of contact for the press and pharmaceutical companies, to give lupus presentations to local clubs and societies, to come up with fundraising ideas or simply to contribute ideas to lead the group forwards. Davina and Lara will organise it, they just need to know who is interested in supporting us, and what days/times would suit most people. We will even provide refreshments.
We are extremely proud of what we have achieved over the past few years – our group is one of the most successful and active in the country. We helped to secure the post of a specialist lupus nurse at Addenbrooke’s, our Information Days and AGM’s have always attracted the largest audiences, we have excellent relationships with the wonderful lupus teams at Addenbrooke’s, Hinchingbrooke and Peterborough hospitals, we are asked to attend events organised by pharmaceutical companies and the NHS and our ‘coffee & chat’ get-togethers are well attended.
So, where do we go from here? We need new ideas and enthusiasm – let’s make those blank stares from people when we say we have lupus a thing of the past. Without additional input our group is in serious danger of having to close.
Please get in touch!!
If you can help in any way please contact:
Davina – Tel: 01954 211679
Lara – Tel: 01954 210765
or email us at
Lupus in the workplace survey
Dr Sara Booth, one of our members who has lupus, has set up a new study in partnership with two researchers at Hull University, Prof. Liz Walker and Dr Liz Price. The study is designed to find out about our experiences of being in the workplace, or even having to leave it because of lupus.
It’s really important that we get as many people as possible answering the survey, whether you’re in work or not. We’d really appreciate hearing about your experiences.
The results will will be published (all answers are completely anonymous). We hope we can use them to influence government policy.
The link and more information about the study are below. Please pass to anyone you think may be interested!
October is Lupus Awareness Month
For Lupus Awareness Month, Shaista and Colette, who both write regularly for our newsletter and have been wonderful supporters of our group decided to make a couple of videos about the challenges of living with lupus. Click the links below to see the videos.
Many thanks to Colette, Shaista and Shaista’s Mum (who filmed the conversations)