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So, what is Black & Red..?

B&R Ball 2016The Black and Red Ball is the pinnacle event of The Lauren Currie Twilight Foundation calendar and it has now become one of the largest awareness events in the UK for vasculitis.

B&R has helped raise nearly 500k for the charity over the last five years. Having hosted a variety of acts with Francine Lewis, Ruth Lorenzo, Steve Hewlett and Shayne Ward performing over the years, the event is a tribute to Lauren and her love of music and entertainment.

The Ball, with it’s name linked into the colours of the charity, raises a huge amount of money. In 2015, Shayne Ward’s association with Black & Red raised a staggering £27k gross from ticket and auction income and supported an amazing awareness PR campaign valued at over 50k in advertising terms. The proceeds from Black & Red goes to fund research, public awareness and patient support services and has helped keep the new respite cabin operational in the last three years.

Black & Red is a great night of entertainment and continues to grow each year. Who could possibly fill the headline spot in 2016?  This year aims to have even more entertainment and energy than 2015 with a band that will deliver number One hit after hit.

Who is it? You better buy a ticket and find out.

Watch this space….

 

Get your tickets for Black & Red 2016!

 

Barrie Johnstone Runs 40miles for Vasculitis

Good luck to Barrie Johnstone who is running the 40 mile Clyde Stride Ultra Marathon on Saturday 18th July 2015. The route follows the River Clyde pathways from the City Centre of Glasgow through Cambuslang, Hamilton, Strathclyde Park and finishes in New Lanark. An amazing challenge which is not helped by the current weather and flooding.  Thank you to Barrie for participating on behalf of The Lauren Currie Twilight Foundation. He decided to support the charity as his wife, Lilian suffers from vasculitis.  Lilian has also supported the charity by participating in the Glasgow 5k (Twilight in the Park) in June 2015 to help raise awareness and funds for us.

The charity was set up in memory of Lauren Currie in October 2010 to help support and fund dedicated vasculitis research projects, awareness campaigns and events plus a range of support services to assist patients and their families.

You can help support Barrie at the Justgiving page he set up to support our charity at https://www.justgiving.com/BarrieJohnstone7/

 

Tickets For Edinburgh New Year Party Could be Yours!

Do you want tickets to the famous Edinburgh New Year Celebrations?? The Lauren Currie Twilight Foundation has kindly been offered 4 tickets to the Concert In The Gardens within cordon party area in the centre of Edinburgh. You and three friends will have enclosure tickets (now sold out) for the Concert in the Gardens featuring Lily Allen, Soul to Soul and Bjorn Again. You will also experience the amazing firework display from the castle. Just make a small donation (no set amount) to the charity for these 4 tickets.

Hurry while they last!

Vasculitis Awareness

The highlighted areas of the featured global map are all the locations around the world that have viewed a video produced by The Lauren Currie Twilight Foundation. A staggering 35,000 video loads – that is a lot of vasculitis awareness we think! Lauren’s legacy, The Lauren Currie Twilight Foundation produced a series of videos and webcasts that can be viewed in our dedicated website channel called Vasculitis TV.  Our videos support patients and their families as well as delivering valuable guidance.  In addition to webcasts, The Lauren Currie Twilight Foundation have filmed interview case studies with patients and vasculitis experts covering a wide range of topics including diagnosing vasculitis, a patient’s journey with vasculitis, fatigue, stress management and diet.

Our guidance material (i.e. interviews or webcasts) are delivered by vasculitis experts that are highly respected in the vasculitis community or patients who are giving their experience from their own journey.

It is incredible to see the global reach that Lauren’s legacy has had on vasculitis awareness and guidance.

 

Brandon Hudgins’ Story with Wegener’s Granulomatosis

 

A story of desire and passion that has created inspiration for anyone affected by vasculitis – a story from Brandon Hudgin. Brandon fought through 2 relapses and continues to train with the ultimate goal of making a US National Team and cracking the 4 minute mile. A feat like this would be an incredible accomplishment for any runner…BUT for Brandon it’d be even bigger after being diagnosed with Wegener’s Granulomatosis.  Earlier this year he ran the mile in at a race in South Carolina. Click the link below to read his story.

http://bringbackthemile.com/news/detail/all_hope_is_gone_brandon_hudgins_story

 

Crowdfunder campaign supporting the vasculitis Twilight Cabin

Check out our campaign video at http://www.crowdfunder.co.uk/the-twilight-cabin. The Lauren Currie Twilight Foundation has partnered with Crowdfunder to raise funds for the Twilight Cabin – our vasculitis respite log cabin at Loch Awe.

The Crowdfunder campaign is seeking to raise funds for the cabin to help with running costs and a future purchase so many more generations of patients may enjoy what the cabin offers. This allows the charity to utilise our main funding for scientific research, awareness campaigns and our patient support services.

Please help spread the word of the campaign so we can raise the funding required.

Giving Vasculitis The Boot

If you are newly diagnosed with Vasculitis, researching the internet for information and fearful on what the future holds with Vasculitis then read on.  They say a picture speaks a thousand words and this particular picture was sent to us by a recently diagnosed patient, Lorne Brown, who had been diagnosed with Granulomatosis with Polyangiitis (formerly known as Wegener’s Granulomatosis) and got to know LCTF when he contacted us initially for support and guidance.  At 81 years of age, Lorne had poor function  in his kidneys as well as lung presentation making him breathless due to the disease.  Investigations and tests diagnosed vasculitis and the form Granulomatosis with Polyangiitis which can affect the smaller blood vessels particularly in the lungs and kidneys.

Lorne was a very active person prior to his diagnosis.   He feared he would never do hill walking again which he loved.  Lorne was diagnosed early with the disease and was placed on treatment involving cyclophosphamide and Azathioprine. Lorne’s kidneys have shown improved function and  throughout he  has kept himself active with short walks.

On Saturday 30th May, Lorne climbed Beinn Ghlas, in the southern Scottish highlands.  Beinn Ghlas stands 1103m and overlooks Loch Tay.  On Saturday 14th June he will abseil 150ft from the iconic Titan crane in Clydebank to support Vasculitis through The Lauren Currie Twilight Foundation.  These are incredible challenges and an amazing journey for an 82 year old with Vasculitis who is back to what he loves doing most.   Well done Lorne!

Join our fight against Vasculitis!

Nissan Company Council Support LCTF.

 

The Lauren Currie Twilight Foundation would like to thank Steve Bulley, senior engineer with Nissan, for nominating Lauren’s charity to Nissan Motor Manufacturing Company Council for charity support. Steve was diagnosed with Granulomatosis with Polyangiitis (Wegener’s) and has been using our website for support and guidance.  The charity was recently contacted by the company council in Nissan and invited to receive a  a donation of £1,000 to support our research and support services with Vasculitis at a presentation event at the Nissan manufacturing plant on Friday 7th February 2014.

The charity was honoured that Steve (pictured) received the cheque on our behalf and delivered a talk on vasculitis, Lauren’s journey and the work and achievements of the LCTF – Lauren’s charitable legacy to Vasculitis. Steve received the cheque from Paul Cox (pictured) on behalf of the Nissan Company Council.  The Nissan Company Council are made up of eleven elected employee representatives and raise funds for several charities every year through a number of events and activities.

Thank you for your amazing support.

 

An Inspirational Awareness Story from Debbie

Debbie Ley is a patient who nearly died from Granulomatosis with Polyangiitis (formerly known as Wegener’s Granulomatosis) a variant of Vasculitis.

Read her amazing story in the Daily Record newspaper which was featured on Saturday 4th January 2014.  It explains her journey and battles with Vasculitis when she was diagnosed after the birth of her first child and how it has not stopped Debbie overcoming amazing challenges.  Debbie recently cycled 250 miles in 3 days (Ayrshire to Aberdeen) to help raise funds for our research at the University of Aberdeen.

Debbie is now taking on the 102 mile Three Piste Cycle challenge in Scotland later this year. Read her story here:  http://www.dailyrecord.co.uk/news/health/single-mum-reveals-how-pedal-2986451 

A Patient Journey

Andy Mackie and Alicon Ferguson recently delivered a patient talk at The Lauren Currie Twilight Foundation Edinburgh Vasculitis Support Group on 23rd November. Andy and Alicon are both patients at the Edinburgh Vasculitis clinic under the care of Dr Kluth and Dr Neeraj Dhaun and are keen to talk about their journey to help other patients.

Andy Mackie was diagnosed with Microscopic Polyangiitis and has given a talk on his journey with the disease.  Andy talks about what to expect from MPA, symptoms, treatments and how the disease has not held him from pursuing other challenges in life.  Alicon Ferguson was diagnosed with Granulomatosis with Polyangiitis (formerly Wegeners Granulomatosis) and Alicon talks about her 30 year journey with GPA and the difficulty of being diagnosed.

You can watch both presentations on our Vasculitis TV at the Patient Support Centre by selecting case study 4 & 5. If you are not already a member then you can register at http://www.thelaurencurrietwilightfoundation.org/component/users/?view=registration