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Lupus General News

London band ‘Tibican’ releases single for Lupus!

London based Indie four piece ‘Tibican’ are launching a song ‘Your kisses work’, to benefit 3 lupus charities, including ourselves.

Here’s what Dom Scialo of Tibican had to say: “The song 'Your Kisses Work' has mainly been the project of myself, as my sister was diagnosed with lupus around two years ago. Having experienced, within the Tibican family, what life is like living with Lupus, we have decided to release our first charity single.

We thought the band would be an excellent foundation to provide some well deserved fundraising options to the organisations battling lupus.

'Your Kisses Work' was written and recorded by Tibican and produced by myself.
We also wrote a B-Side 'Wolf' which will be free to download to the first 150 people who purchase 'Your Kisses Work'.

It's been a long process but we're ecstatic to finally announce the imminent launch of 'Your Kisses Work' as part of our campaign to raise awareness for the St. Thomas’ Lupus Trust, Lupus UK & the Lupus Foundation of America.

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Thanks to our nurse, Angie Barwick

It's with a heavy heart that we announce that our fantastic online Nurse, Angie Barwick, has finally taken retirement from our website advisory service as of 15th February 2016. For years, she's tirelessly supported many of us via the Lupus.org.uk website and offered help and answers to those with Lupus, their friends and family, too. I'm sure you'll all join us in sending her thanks and best wishes for the future. 

 

Thanks for your support this Christmas!

If you're a company or someone that sends lots of Christmas cards you can still support us. Please click here and you will be taken to Charity Christmas cards website where you can place an order.
 
The cards can be personalised however you like, they can include your name, address, company logo website etc. You can also spread lupus awareness by having our logo printed on the cards too.
 
There are lots of designs to choose from and dependant upon which card you choose 10 - 50p per card is donated to us.
 
Please remember to select St.Thomas Lupus Trust as your chosen charity.
 
If you just want to purchase a small amount of cards please click here to go to our Christmas card page and whilst you're in our shop why not look at our gift range and lovely stocking fillers, all at discounted prices. Profits from everything you purchase goes towards our vital lupus research. Thanks!

SLE patients and their carers needed to take part in a new lupus survey

SLE Patient News

We urgently need people to take part in a new lupus survey. Please note we are looking for both SLE patients AND their carers to take part. If you are interested in helping provide vital information regarding how lupus impacts on people please consider taking part.

"The St Thomas’ Lupus trust would like to inform you of a study that is about to be conducted on Systemic Lupus Erythematosus (SLE) and provide you with the opportunity to participate.

The study is being carried out across the UK and will involve both those who have SLE and their families.

The aim of the study is to explore the experiences of those living with Lupus and to understand the impact the condition on various aspects of life, for both patients and their families / partners.

The data collected will form part of a disease awareness campaign to help raise awareness of Lupus in the UK among the medical community, politicians and policy makers, as well as the general public. We are interested in speaking with both patients, and carers of patients, with SLE aged 18 or over

Cello Health Insight is a leading UK-based independent market research agency, and will be responsible for administering the questionnaire and analysing the results. Cello Health Insight is an independent healthcare market research agency, and conducts many studies looking at all aspects of healthcare. We abide by the Data Protection Act and a range of industry codes of conduct (including MRS. ESOMAR, BHBIA guidelines), which means the research is entirely confidential and participants are guaranteed anonymity.

The study is being sponsored by a pharmaceutical company, but none of the questions are of a marketing nature.

The research will take the form of an online survey lasting approximately 30 minutes, which you can complete in your own time on a computer or tablet device. A series of preliminary questions will be asked before the survey to assess suitability to take part in the study.

You would be asked personal questions about your condition including Lupus history, demographics (race, income etc) and how Lupus impacts yours and family life. As a thank you for your time, an honoraria will be offered on completion.

Participation in this survey is voluntary and you have the right to withdraw at any time.

If you are interested in being involved in this research we would love to hear from you! Please contact Veronica Youdell via e-mail at VYoudell@cellohealth.com for more information on this study.

Patron Kelle Bryan chases more money for the St Thomas Lupus Trust!

Kelle-main

Patron Kelle Bryan (and husband Jay Gudgeon) won an amazing £20,000 for us on All Star Mr & Mrs. Not satisfied with that Kelle went on to appear on Celebrity Chase and won another £1,000.

Her team mates were: Strictly Come Dancing judge Len Goodman, model Amy Willerton and former Olympic swimmer Mark Foster. The team took on The Governess Anne Hegerty.

Thanks again to Kelle, what an awesome Patron!!

The perfect Mr & Mrs play for the St Thomas Lupus Trust!

AllStarMrMrs

Patron Kelle Bryan and husband Jay Gudgeon appeared on All Star Mr & Mrs on Wednesday 30th July. Joining them were: Rab C Nesbitt star Gregor Fisher with his wife Vicki Burton and EastEnders actor Terry Alderton with his wife Dee Ivens.

Kelle and Jay have only been married 4 years, which was the least amount of time of all the couples, but were well prepared having practised at home. It certainly paid off with them winning the show and a massive £20,000 for the St Thomas Lupus Trust!

A huge thank you to Kelle and Jay for this fantastic amount of money and some excellent lupus awareness, you’re both amazing!

If you missed the show here’s the catch up link: https://www.itv.com/itvplayer/all-star-mr-and-mrs

The Louise Coote Lupus Unit is moving to Guy’s Hospital

guys hospital 2In autumn 2014 the Louise Coote Lupus Unit will move to a newly refurbished facility on the 4th floor of Tower Wing at Guy’s Hospital, alongside Rheumatology.

Why is the Louise Coote Lupus Unit moving to Guy’s Hospital?

As part of our ongoing service improvements we are relocating our dermatology, lupus and rheumatology services to the Guy’s Hospital site, which is part of Guy's and St Thomas' NHS Foundation Trust. Patients visiting the Louise Coote Lupus Unit will continue to receive high quality, specialist care and we believe we can improve this care further by moving the service to our newly refurbished facility at Guy’s.

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Kitchenette's You've Got a Friend

The Kitchenettes!

Three years ago a group of seven ladies (four sisters and three friends) came on one of our Ambassador, Mike Kings, singing retreats. They had never really sung before, just in the kitchen, after a few glasses of wine at their girly sleepovers. Needless to say they were quite nervous but had a great time. They caught the singing bug and we have been working together ever since.

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The St Thomas Lupus Trust joins the Prescription Charges Coalition

The St Thomas Lupus Trust has joined together with 25 other organisations to campaign for an end to unfair prescription charges for people with long-term medical conditions.

We have joined the Prescription Charges Coalition to campaign to abolish prescription charges for people with long-term health conditions. In the current system some health conditions qualify for exemption whilst others do not. Prescriptions are free in Scotland, Wales and Northern Ireland. The St Thomas Lupus Trust believes it is time for a fair and consistent system to be put in place.

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