|
|
So we've created a new website over the last couple of weeks.
Considering we've taken a few different steps with the way the group runs, we thought we would get a new website and email to go with it! (Don't worry and email will be sent to inform all of the changes: new web URL and email, along with our other social media links!) What so you all think? SWLG
0 Comments
Hi everyone,
BBC North West Tonight featured a segment about lupus and the large investment in research into the disease in Manchester yesterday evening. It featured interviews with Julie Morton (who has lupus) and Prof. Ian Bruce. You can watch the clip (starting at 07:08) online at; http://www.bbc.co.uk/iplayer/episode/b08fm4sf/north-west-tonight-late-news-21022017 Best wishes, SWLG Hi everyone, On October 31st 2017 the government published, ‘Improving Lives: The Work, Health and Disability Green Paper’. The aim of this consultation paper is “to understand why disabled people and people with health conditions might be unable to get a job or keep one, and to recognise the wide range of conditions and circumstances they face”. LUPUS UK National Office has written a response to this consultation and submitted it prior to the deadline this Friday, 17th February 2017. I have attached a copy of our full response. It can also be read on our website at http://www.lupusuk.org.uk/green-paper-response/. This consultation response has been submitted in addition to the one being submitted by ARMA (of which we have been included) on behalf of the musculoskeletal community. Best wishes, SWLG
Hi everyone,
At LUPUS UK National Office we are preparing a report to submit to the Scottish Medicines Consortium (SMC) as part of a consultation into the use of Benlysta (belimumab) for lupus patients. We have produced an online survey to help us collect more information from patients which we can then use for this report. We would like anybody over 18, living in the UK with a diagnosis of SLE to complete the survey if possible. We would especially like anybody who has been given Benlysta treatment to complete it so that we can include their experiences. The survey is available at https://www.surveymonkey.co.uk/r/SMCLUPUSUK and we will be collecting responses until 16th February 2017. Lupus UK have created a page on our website with a few details about this project and a link to the survey - http://www.lupusuk.org.uk/smc-benlysta-consultation/ We would be very grateful if you could help to circulate this survey to your local groups by email and/or social media where possible. P.S. In other news, last week we published the first ‘Topic of the Month’ article for 2017 about diet and healthy eating. You can now read this article at http://www.lupusuk.org.uk/diet-and-healthy-eating/ Best wishes, SWLG Hi everyone,
On Saturday evening’s episode of Celebrity Mastermind, comedian Nathan Caton very kindly chose LUPUS UK as the charity to receive his appearance fee and we got a mention on the show. You can watch the show on BBC iPlayer at http://www.bbc.co.uk/iplayer/episode/b08bldmr/celebrity-mastermind-20162017-episode-10 Best wishes, SWLG Hi everyone,
Happy New Year to all! I received this email this morning, which contains the fantastic news that LUPUS UK was one of the winning charities in Starbuck’s Red Cup Cheer campaign last month, meaning that we will receive a grant of £1,000 which will be paid to us soon. This award was won thanks to the amazing support we received on social media. Again, Selena Gomez’s fans were extremely helpful and made hundreds of tweets to ensure we won. How fantastic is that! Lupus awareness in on the rise! Best wishes, SWLG Videos from the East Anglia Lupus Information Day 2016 are now available to watch on the LUPUS UK website and YouTube channel. You can find them here - http://www.lupusuk.org.uk/east-anglia-lupus-day-2016/
Recycle4Charity I’ve been informed that some people may be having trouble using the link in the National Office Newsletter which was recently circulated. You can access the page and read more about our membership of this scheme here - http://www.lupusuk.org.uk/recycle-ink-cartridges/ I hope that you all have a wonderful time over the festive season and wish you good health and prosperity in 2017. Best wishes, SWLG Today was our Christmas meal, we all had a fantastic time and good food!
Don't we look great in our Christmas jumpers! Thanks to all that were able to make today & those that didn't hope you soon feel better. We all had a lovely time so until the next meet up in January 2017 we hope you have a Merry Christmas & hope 2017 is a good year for you all. From your lupus team Edwina, Cath, Emz & Gordon. Xx I’m very pleased to let you know that LUPUS UK has been included in Starbucks’ Red Cup Cheer campaign for 2016. We were chosen to be one of 250 charities and have been guaranteed a donation of £500.
The 50 charities that make the most ‘noise’ on social media before Christmas will receive a higher donation of £1,000. The ‘cheering’ phase is now running and I will schedule plenty of posts to get our supporters involved. You can read more about the campaign at http://www.lupusuk.org.uk/red-cup-cheer-2016/. Please share this with your groups to give us the best chance of winning the higher donation. Thank you, SWLG Last night Paul Howard (from Lupus UK) was interviewed by BBC Radio Northampton to raise more awareness of lupus, especially amongst their black and ethnic minority community.
You can listen to the interview (starting at 1:13:06) at; http://www.bbc.co.uk/programmes/p04d98zx All the best, SWLG |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
February 2017
Categories |