Leicester University E Bulletin

DATE: 19th October 2009

Leicester academic attends reception supporting research into immune system disease

Leicester academic attends reception supporting research into immune system disease
Dr Mark D. Evans, a member of the Radiation & Oxidative Stress Section in the Department of Cancer Studies & Molecular Medicine at the University of Leicester, was one of 80 people invited to Downing Street when Sarah Brown hosted a reception during October, Lupus Awareness Month, in support of research into Systemic Lupus Erythematosus (SLE)

Lupus is a disease of the immune system, likened to self-allergy, where the immune system targets an individual’s own tissues and organs. There are some 50,000 sufferers in the UK and possibly many more people living with disease, but undiagnosed.
Dr Evans explained: “I was put forward as a guest by Mrs. Yvonne Norton, chair of West Midlands Lupus Group, who I have known for many years, as I had also contributed a chapter on ‘Drug-Induced Lupus’ to a book edited by Yvonne (‘Lupus – Diagnosis & Treatment’), published by LUPUS UK and launched at the reception.

“Our research group at the University of Leicester has in the past examined and published work regarding DNA damage and repair, oestrogens and lupus-inducing drugs - the role of oxidative stress, antioxidants and DNA damage in the pathogenesis of SLE remains an area of interest for us.”

Lupus has many symptoms (ranging from non-specific – fatigue, weight change, fever, swollen glands, muscle and joint pain; to more specific – particular types of skin rash, light sensitivity, mouth ulcers, inflammation of membranes in the chest, abdomen and around the heart, arthritis, blood and kidney abnormalities, seizures or psychosis) which can vary with individual presentation, almost no organ system may remain unaffected.

SLE is significantly more prevalent in women, who also are more likely to have pregnancy complications. A genetically complex disease, SLE, can also be exacerbated or initiated by external factors, such as viral infection, ultraviolet light, selected medications and possibly some dietary components.

Further information is available on the website: www.lupusuk.org.uk
 

STRATFORD MIDWEEK HERALD

DATE: Tuesday, 3^rd November 2009

Barford villagers took to the stage and raised more than £300 for World Lupus Month during a karaoke night at The Granville recently.

Local village character Duncan Montague, who normally frequents the bar from the other side, spent the evening serving customers from behind the bar and donated his tips to the charity. The pub has been supporting Lupus for about two years and has raised £3,300 so far through fundraising events and donations.

Proprietor Val Kersey said. “We’re delighted to have raised yet more money in support of World Lupus Month. As well as supporting a very worthwhile charity everyone enjoyed the evening and it was great to hear so many talented voices.

 “My best friend’s sister died of lupus and now her niece has been diagnosed so it’s very close to home really.”

Ms Kersey said regular customer Alan Byereley’s wife, Carol, also died of the disease last year.

Each October Lupus, the worldwide charity for people with the incurable immune system illness, aims to raise awareness and inform those seeking diagnosis of the help and support available to them.

More than five million people worldwide have lupus, including 50,000 in the UK. Ninety per cent of sufferers are female but men and young children can also be affected by the disease. Sufferers endure terrible symptoms and in some cases lupus is fatal.

The next fundraising event at The Granville will be a ‘70s ABBA evening on New Year’s Eve, and there is a box on the bar where donations can be placed throughout the year.

Family taking lupus message to the top

A Hednesford family is off to Number 10 Downing Street in a bid to get a special message across at the highest level.

John Hibbs, from Baker’s Way, and his family will be travelling to London to raise awareness of the debilitating condition Lupus.

They will also be accompanied by members of West Midlands Lupus Group.

John, aged 31, has been fundraising for the Lupus Group since his sister Viki Hibbs, was diagnosed with the condition 18 months ago.

And as October is Lupus Awareness Month, John wanted to do something special.

He was astounded that despite her busy schedule, PM Gordon Brown’s wife Sarah has agreed to host a charity evening at No 10 for the cause on Tuesday (October 6).

Lupus Group chairman Yvonne Norton MBE has written a book for GPs entitled ‘Lupus - Diagnosis & Treatment’, so the No 10 meeting is also to publicise her work.

John said the main symptoms of Lupus are fatigue, muscle aches and pains - so the condition can often go undiagnosed or misdiagnosed.

Since his sister was diagnosed, John has taken part in charity runs, and held raffles and car boot sales. He has already raised £3,000 for the West Midlands Lupus Group.

Fundraising has also involved an artist creating special pictures for the charity, one selling for over £1,000.

Liverpool FC have agreed to allow two paintings of team members to be created and sold for the charity. They have sent two photographs from which more artwork will be inspired.

Despite suffering from arthritis, John will be running the London Marathon next year for the cause.

Monies raised from the marathon will be used to help continue funding the Lupus UK specialist nurse and the Lupus UK research co-ordinator, both based at Queen Elizabeth/City Hospitals, Birmingham - the first fully patient-funded posts of their kind in the UK.

John’s efforts are also attracting hundreds of hits on social networking sites Facebook and Twitter.

Visits to No 10 are normally for between 40-80 people. They involve a drinks reception with ‘short, informal speeches’.

“We are desperate to help those who suffer from Lupus and help increase awareness of doctors and the public about the disease,” John said.

His sister Viki is now managing the disease, though she suffers from side effects from the steroids she has to take.

As well as his wife and sister, John will also be taking his parents, grandparents, Viki’s consultant and nurse, and one of his supporters.

Wolverhampton soul singer Beverley Knight has also been invited.

The remaining guests will be invited by Lupus West Midlands and Lupus UK.

If anyone would like to sponsor John, he can be contacted on 07872 341 008.

Check out www.hibbsy.com,www.facebook.com/run.hibbsy.run, www.twitter.com/hibbsy or  www.westmidlandslupus.co.uk

DATE:  29 September 2009

Page 20   Reporter: Alice-Azania Jarvis

Mrs Brown arranges a party – over Twitter

While Gordon Brown's popularity tumbles ever lower, his wife Sarah seems able to do no wrong.

The former PR professional recently added a very modern feather to her cap by overtaking Stephen Fry as the country's foremost celebrity twitterer (she has 792,920 followers to his paltry 773,431).

Now we hear that the tech-savvy Mrs Brown plans to throw open the doors of her home to one lucky follower and his friends.

John Hibbs, an IT analyst and part-time scout for Liverpool Football Club, messaged Mrs Brown via the site about his fund-raising efforts for the West Midlands Lupus Group. He's currently training for the London Marathon to raise money for the charity, who have supported his sister since she was diagnosed with the disease.

Now he (along with 80 of his friends) has been invited for a specially-arranged knees up at No 10 next month.

"I wasn't even expecting a reply, so to get something back so quickly really shocked me," remarks a star-stuck Hibbs. "It all happened so quickly."

City woman scales dizzy heights of London for charity

THIS summer a Birmingham woman will quite literally make an exhibition of herself as she climbs feet into the air with a notebook, sits calmly in a chair and remains there for a whole hour. Forty-nine-year-old Kay Lockley is just one of 2400 people who will mount the fourth plinth in Trafalgar Square in July to become part of a unique piece of art showcasing humanity and herself. For a long time dubbed ‘the empty plinth,’ a number of statues of Kings and Queens have already occupied the monument but from July, acclaimed artist Antony Gormley will transform it into a unique piece of art that will be screened live on Internet TV channel SkyArts.

For one hundred consecutive days, 2400 selected members of the public will each spend an hour on the plinth and whilst they have been given the freedom to use their time high up in the air completely how they want to, Kay will spend her hour raising awareness of an illness very close to her heart.

Nine years ago Kay was diagnosed with a disease known as Lupus; a common illness that occurs when the body’s immune system attacks its own tissues and organs. Inflammation by lupus can affect many different bodily systems including joints, skin, kidneys, blood cells, heart and lungs.
When Kay first heard of the initiative via national press, she decided to enter, never expecting that she would actually be picked to have an hour on the plinth,
“I just entered randomly on the site and when I found out that I had been picked at random to have an hour on the plinth I was just shocked.
“I always knew I wanted to do something for Lupus to raise awareness. It is such a common disease and so difficult to spot. You could be in a room full of lupus sufferers and each person could have different symptoms so I am keen to get the message across to raise awareness of this disease and help let people know what to do if they suspect they may have it.”

Kay will have her large notebook and pen at her side throughout the whole experience and will use it to write small messages about the disease, holding it towards the crowd so that passers-by can stop and learn something from her ordeal. She will also have a host of family and friends walking around Trafalgar Square below her, handing out leaflets and giving advice to those who seek it.
The first time Kay has chosen to help boost the cause for lupus sufferers everywhere, she has already been overwhelmed by the amount of attention that her conquest has gained and even has a facebook page set up for members of the public to pledge their support.
“The press and attention I have had since I was awarded an hour on the plinth has been extraordinary. I did a radio interview a few days ago, which was a little scary but really good fun. It is all starting to become real for me now and all this attention is great for lupus sufferers.
“Originally, I was only going on the plinth to raise awareness of lupus but as people have heard of what I am doing, many have offered to sponsor me. I’m not looking for a specific amount of money for sponsorship or anything like that. I just want as many people to know about lupus as possible but if anyone wants to leave a donation to the lupus charity then that is brilliant and obviously I welcome them to do so.”

Kay will take to the plinth in Trafalgar Square on July 26 from 7pm-8pm and welcomes all support. If you wish to make a donation to Lupus UK in her honour, visit www.lupusuk.org.uk or phone 0845 021 2110.

DUDLEY PCT CHAIRMAN DROPS IN TO DISCUSS FUTURE OF HEALTHCARE IN THE BOROUGH

Members of a patients' group were told about the future of healthcare in Dudley during a talk by the chair of the Dudley Primary Care Trust (PCT).

Members of the West Midlands Lupus UK group, which meets every month in the rheumatology department at Russells Hall Hospital, listened intently as Rachel Harris outlined how healthcare services will be improved in the next four years.

Mrs Harris presented each of the members with a copy of Reaching Excellence - A Primary Care Strategy for Dudley 2009-2013.

Mrs Harris told InsideOut: "The talk was to explain the role of the PCT and what challenges we face in the coming years.

"It was also a good opportunity to explain to them about the Reaching Excellence strategy which outlines how we will improve healthcare services in Dudley in the coming years.

"I'm a great believer in coming to talk to people and it's part of my role as chair of the PCT to make sure people understand what we are doing."

Yvonne Norton, chair of West Midlands Lupus UK, said the members had enjoyed the talk and thanked Mrs Harris for her time.