October in the UK is Lupus Awareness Month so CelebMix Cares reached out to Lupus UK to find out a little more about the UK’s national registered Lupus Charity. Charity worker Paul Howard answered all our questions about the charity, their aims, history and discussed fundraising ideas.
What is LUPUS UK?
LUPUS UK is the national registered charity supporting people with lupus and assisting those approaching a diagnosis. We have a number of Regional Groups around the UK who arrange medical talks, meetings and organise fundraising events. LUPUS UK produces a wide range of high quality information for patients, carers and medical professionals as well as providing grants for research specialist lupus nurses.
How long has LUPUS UK existed?
The charity was first formed in the late 1970’s by Cheryl Marcus. Cheryl reached out and connected with other lupus patients and formed a group called The British SLE Aid Group (BSLEAG) which was a part of The British Rheumatism & Arthritis Association (now Arthritis Care). In 1990 LUPUS UK opened its National Office and became a charity of its own.
What are LUPUS UK’s aims as a charity?
LUPUS UK aim for a world where people with lupus can live full and active lives. We aim to empower people by providing information about lupus and offering support, so their voices are heard and their condition diagnosed and managed effectively.
Where did the inspiration for the charity come from?
When Cheryl Marcus first set up a group it was her intention to connect with other people affected by lupus, which was very poorly understood and largely unheard of – this is still an important part of the work of LUPUS UK today. It was felt that lupus patients and their families needed their own charity, through which they could also fund research, which resulted in LUPUS UK becoming a charity in 1990.
What kinds of information can your charity provide to people first learning about lupus?
LUPUS UK has a wide range of information about lupus available in a few different formats. There is a range a leaflets and booklets which cover various aspects and symptoms of lupus (such as diagnosis, fatigue, medications, kidneys, employment and pregnancy) which are available free of charge in physical format or to download as digital pdfs from the website. We also have a DVD aimed at people who are newly diagnosed with lupus which is available to order.
Do a lot of lupus patients contact you for advice?
Yes, we get contacted a lot by people with lupus. This is done through our various channels of communication including telephone, email, our forum and social media sites (Facebook, Twitter and Instagram).
Do a lot of non-lupus patients contact you?
We receive a lot of enquiries from people who have not yet been diagnosed with lupus, but suspect that it may be the cause of their symptoms and are seeking guidance. We also have a number of carers, family members and medical professionals who contact us looking for more information about lupus.
When people fundraise for you, what does the money go towards?
Most of the money donated from fundraising events is given in grants for lupus research and to fund specialist lupus nurses in NHS hospitals around the UK. It also goes towards the production of our wide range of high quality information for patients, carers and medical professionals and helps us to organise support group meetings in various regions.
What kind of fundraising activities could people do to raise money for your charity?
There are loads of different fundraising activities that you can do to raise funds for LUPUS UK, the limit is your imagination. We have lots of fundraisers who take part in sponsored walks, coffee mornings, running and cycling events, skydives and much more for us. You can find loads of ideas on our website at http://www.lupusuk.org.uk/fundraising-for-lupus-uk/
Check out our Lupus Awareness Month articles out, you can see the latest one right here. Don’t forget to like us on Facebook or follow us on Twitter @CelebMix an check out Lupus UK on Facebook and Twitter too!