Page 5 - N&V Winter 2019

Chief Executive Officer’s Report

CEO’s Report to the LUPUS UK AGM 18th May 2019

We continue to have reduced our print runs accordingly. online to take part in numerous events and
make great Last year there were 474,326 unique visits we are extremely grateful to them for
strides in to www.lupusuk.org.uk an increase of their tremendous efforts, covering: Go That
reaching out over 21%. LUPUS UK News & Views is Extra Mile, the London Marathon, Great
and raising currently posted to members but an online North Run, numerous other runs and walks,
lupus awareness. In particular via modern version is in the pipeline for those who wish Lunch 4 Lupus, coffee mornings a wing
technologies – on the internet with social to receive it this way. walk and much more.
media. However, there continues to be a Keeping people who have lupus in touch is A special mention of the Wooler Walkers
place for print media and we continue to a high priority and we have continued to from the North East who each year walk
publish LUPUS UK News & Views, along see growth in numbers using our various the Cheviot Hills and have over the years
with our leaflets, booklets and other sites, as at 31 December 2018: Facebook raised a substantial sum of money.
information in paper form. It is important 30,966, Twitter 8,562 and HealthUnlocked
that we do this so that our information and 22,470. Our latest ‘recruit’ Instagram has So, a huge thank you to all our wonderful
news is available to all, as not everyone 3,430 (treble the number for the previous supporters who have taken part in the
has access to the internet and many year). Peer support is so important and many events and challenges mentioned
people prefer to have their reading social media makes it much easier to above and to those who have supported
matter in a tangible form. LUPUS UK by making a donation or giving
contact others.
However, we increasingly see that people their time.
obtain most of their information electron- Numerous hospital stands have been A big thank you to everyone who has
ically via personal computers, tablets and arranged up and down the land for both volunteered for LUPUS UK, with special
other mobile devices. Indeed, when the Lupus Awareness Month and World Lupus thanks to those who run our Regional
LUPUS UK website was last upgraded it Day. There is always a great appetite for Groups, our telephone Contacts and to the
was to make the site compatible and lupus information, not only from those who Trustees, the legal and financial guardians
accessible through mobile devices. have lupus, their family and friends but of your charity and finally my colleagues
We know that a great deal of lupus also members of the medical profession. at National Office for their dedication
information is obtained this way and have The internet also assists greatly in and team spirit.
seen an ongoing reduction in the amount of fundraising and during the past year many Chris Maker
paper literature that is requested and so supporters and members have signed up

LUPUS UK GRANTS PROGRAMME 2019

Prof S Sutton, Prof C Gordon & M The LISTEN study (Listening: Involving SLE £24,683 Agreed
Sloan, University of Cambridge patients To Empower and Negotiate recognition over 10 months

Dr B Parker, Prof I Bruce, Prof R Elliott Stratifying cognitive dysfunction in systemic £24,865 Agreed
& Dr M Barraclough, University of lupus erythematosus and its associated factors: over 12 months
Manchester A pilot study.

Dr A Alase, Dr E Vital, Dr M Wittman Plucked hair follicles as a diagnostic tool in £25,000 Agreed
& Dr Md Yusof, Chapel Allerton SLE alopecia over 12 months
Hospital, Leeds
Prof M Ehrenstein, UCL, London Characterising T and B cell phenotype and £23,644 Agreed
function after combination rituximab and over 6 months
belimumab.
Dr S Sacre, Brighton & Sussex MicroRNA regulation of cytokine production in £13,000 Agreed in principle
Medical School systemic lupus erythematosus over 12 months subject to funding

Dr E Rosser, UCL, UCLH, GOSH, Is the metabolic profile of lymphocytes £6,254 Agreed in principle
London altered at puberty and does this contribute to over 6 months subject to funding
the onset of Juvenile Systemic Lupus
Erythematosus? A preliminary study.

Dr K Shah, Dr V Reddy, Dr C Ciurtin Does a Doctors Unmet Educational Need £25,000 Declined
& Dr M Leandro, UCL, London Contribute to patients’ poor medication over 24 months
adherence in Systemic Lupus Erythematosus?

Dr M Mutch & Dr P Ames, Nitrated fibrinogen in Systemic Lupus £24,926 Declined
University of Aberdeen Erythematosus: A possible explanation for over 12 months
increased thrombosis.

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luPus uK NEWS & VIEWS SUMMER 2019