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Grant, Adrienne and Lauren Currie

The Twilight in the Park walk and film are a great way to honour Lauren and celebrate her life. It’s also going to be great fun

On the evening of Saturday 13 June 2015, Scotland’s only Vasculitis charity, the Lauren Currie Twilight Foundation will be holding a 5km Twilight sponsored walk followed by an exclusive outdoor cinema as part of their ‘Twilight in the Park’ event in support of vasculitis sufferers in the UK.

The walk takes place in Glasgow’s Pollok Country Park, Pollokshaws Road from 7:00PM. Walk the route through the darkened woods which promise you will not be alone and watch out when the sun goes down! It will be followed by a giant 24ft pop-up cinema screening of a secret blockbuster film.

Pollok Country Park is a superb setting for the walk, having been voted Europe’s Best Park in 2008.

Tickets will cost £10 for adults and £5 for children. Free passes to Twilight in the Park are available for fundraisers. Adults raising a minimum of £50 and children raising a minimum of £25 for The Lauren Currie Twilight Foundation will obtain free entry.

The Lauren Currie Twilight Foundation was set up by Grant and Adrienne Currie following the tragic death of their 15-year old daughter and only child Lauren in 2010. Lauren had suffered from Granulomatosis with Polyangiitis (formerly known as Wegener’s Granulomatosis), a variant of the auto-immune disease vasculitis.

Lauren’s condition was only diagnosed in the final hours of her life and her parents realised that, with earlier diagnosis, her life could have been saved.

Because vasculitis is uncommon and early diagnosis is an important factor in the effectiveness of medical care, public awareness of the condition is one of the charity’s main objectives.

As well as educating the general public, the charity educates medical professionals on how to spot and diagnose the disease.

Grant Currie said, “We want as many people as possible to take part in this great walk and raise money for our objectives. The funds will be used to advance research into the relatively unknown condition vasculitis.

“The Twilight in the Park walk and film are a great way to honour Lauren and celebrate her life. It’s also going to be great fun and an unusual social event for those who like to help others.”

Vasculitis

The Foundation has provided £62,000 to the University of Aberdeen, which will be used to support a three-year PhD research project on vasculitis.

The Lauren Currie Twilight Foundation aims to raise the international profile of vasculitis, and is one of only two vasculitis-specific charities operating in the UK. It is keen to collaborate with other relevant charities, including those in the US.

So what is vasculitis? Grant Currie explains: “Vasculitis refers to an inflammation of the blood vessels. It is an uncommon illness and different variations can affect people of different ages.”

The Lauren Currie Twilight Foundation has produced a video explaining the condition, which can be found here.

Tickets for the event can be purchased here.

http://www.thelaurencurrietwilightfoundation.org
http://www.glasgow.gov.uk/?articleid=5343
http://www.eventbrite.co.uk/e/twilight-in-the-park-tickets-1...
https://www.youtube.com/watch?v=W94a0KLa1vQ

Images of previous fundraising events are available on request.

We would be delighted to arrange interviews with Grant Currie.

ENDS

The Lauren Currie Twilight Foundation

What is the background to The Lauren Currie Twilight Foundation?

Lauren was only 15 when she tragically and prematurely lost her battle with vasculitis on October 23 2010 at Crosshouse Hospital. Lauren died from Wegener’s granulomatosis – a form of vasculitis which had remained undiagnosed until the final hours of her life. Lauren’s lungs had been fatally damaged by vasculitis, which resulted in internal bleeding and contributed to her death.

The charity was founded within a couple of days of Lauren’s death by her parents, Grant and Adrienne. The charity was named in Lauren’s memory as a tribute to their daughter’s inspirational character and features ‘Twilight’ in the title in recognition of the love she had for the Twilight books and the films. The charity was set up to help and support anyone affected by vasculitis, to raise awareness of the disease throughout the United Kingdom and to fund dedicated research that seeks to identify and improve treatments.

Lauren’s charity was formerly registered in Scotland in December 2010 with the Office of the Scottish Charity Regulator (OSCR).

Charity Registration Number SC041934.


What are our charity objectives?

Vasculitis has no known cause, no cure and can be fatal if left undiagnosed. The charity set out key objectives in our constitution covering awareness, education, research and patient support. The charity meets these objectives from public donations and the proceeds from our own charity events. The Foundation does not receive any government funding.

Awareness

Over 3,000 people are diagnosed with Vasculitis each year in the United Kingdom. Premature deaths from vasculitis remains high at 25% in five years as a result of late diagnosis and where the disease has damaged vital organs. Awareness is fundamental to saving lives.

The charity organises key events throughout the year to raise public awareness of the disease. Events include 5k fun runs in Glasgow and Aberdeen, charity abseils and our black tie Black & Red ball in the Glasgow Thistle Hotel. The events were supported by Real Radio and Northsound FM commercials and reached out to over 700,000 listeners in Scotland to raise awareness.

The charity patron, Dr Hilary Jones, has also produced a charity awareness video that provides general information and awareness of vasculitis. Dr Hilary had an integral role in raising the awareness of meningitis in the UK and LCTF have appointed him patron to support the heightening of awareness for vasculitis.

Education

GPs and health professionals are vital to early diagnosis and having the awareness and the suspicion to test patients for vasculitis. The charity organises exhibition materials for GP conferences within the UK in addition to symposiums and online webcast lectures to specialised sectors i.e. renal, rheumatology, respiratory/ENT etc.

The charity recently completed an exclusive online lecture to the Renal Association and the British Society for Rheumatologists, which attracted UK Nephrology and Rheumatology consultants to a dedicated online vasculitis conference. The charity also funded a paediatric vasculitis symposium for rheumatologists in Scotland to assist doctors in new research and characteristics of the disease.

Research

The charity formed a funding partnership with the University of Aberdeen in 2012 to support a PhD research project on vasculitis. The LCTF have committed £62,000 of funding to the University for dedicated research over three years.

The research project aims to use 3D imaging equipment to view the vessels and cell behaviours from a completely new angle which has never been used in previous research projects. The research allows us to see the difference from cell activity in a non-vasculitis sample compared to a vasculitis patient. The research will seek to identify biomarkers in the effective treatment of the disease.

Patient Support

The charity delivers a comprehensive support facility from a secure portal within the charity website. The Patient Support Centre launched in April 2013 and provides a range of services that have been specifically commissioned and selected to support anyone affected by the disease. The support facility was designed, launched and funded entirely by the charity. Services supplied include:

• Online discussion forums for patients to interact with each other and ask questions.

• Anxiety support publications and counselling support.

• Diet & nutrition publications.

• Relaxation and sleep support therapy apps.

• Respite facilities

• Patient grants to fund mobility aides for anyone affected by vasculitis.

• Patient alarms supplied free of charge to patients at risk of seizures and strokes.

• Vasculitis & treatment guidance leaflets.

• Vasculitis guidance videos i.e. patient interviews, consultant interview etc

• Webcast guidance lectures

The Twilight Cabin

The Twilight cabin launched in February 2014 and provides a 3 bedroom self-catering log cabin on the banks of Loch Awe. The cabin is available free of charge to patients diagnosed with vasculitis for respite breaks with their family.

The cabin is situated in a secluded location with stunning views of the loch and countryside. It is designed so patients can get a break and relaxation. The cabin lease, furnishing and on-going running costs are funded entirely from the charity.

What is Vasculitis?

Vasculitis is a medical term meaning inflammation of blood vessels. It can be primary (occurring on its own) or secondary (occurring as part of another condition). Some people with vasculitis test positive for antibodies to constituents of certain white blood cells (anti-­‐neutrophil cytoplasmic antibodies or ANCA) and are said to have ANCA vasculitis.

Who gets vasculitis?

Vasculitis is an uncommon illness. About 20 in every 100,000 people get ANCA vasculitis every year in the UK. Vasculitis can affect all age groups. Some are mostly diseases of childhood (e.g. Kawasaki), whilst others persist throughout adult life (ANCA systemic vasculitis). Some principally affect the elderly (e.g. giant cell arteritis).

What causes vasculitis?

• In most cases the cause is not known. Many experts think that the illness is the result of infection in people who were born with a certain genetic predisposition.

• Vasculitis can also be caused by Illnesses which trigger inflammation in the body such as rheumatoid arthritis and inflammatory diseases of the bowel.

• Medicines associated with vasculitis include certain types of antibiotics (e.g. quinolones, sulphonamides, beta-lactams), anti‐inflammatories, the contraceptive pill, some types of fluid tablets (thiazides) and flu vaccines.

• Rare types of cancer (paraproteinaemia, lymphoproliferative disorder) can occasionally cause vasculitis.

Website:
http://www.thelaurencurrietwilightfoundation.org
Telephone:
0845 600 5855
Post:
PO Box 26206
Kilmarnock
East Ayrshire KA1 9ER
Email: info@thelaurencurrietwilightfoundation.org

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