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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

 

Line Up For Black & Red Ball Announced

“The best female impressionist in the country” The Sun

“You have a star aura” Simon Cowell

The UK’s best loved impressionist took us all by storm in this Summers Britain’s Got Talent series by making it all the way to the final with her incredible talent and disarming sense of humour. Francine Lewis joins the 2013 Black & Red Ball and brings her amazing collection of impressions to support Vasculitis with the LCTF.

Since 2013 BGT she has gone on to be nominated by the UK public for The Most Popular Female Personality of the year and has attracted nearly 100,000 Twitter followers, illustrating how she became one of Britain’s comedy faces.

Francine did an amazing audition and live final performance with impressions of Katie Price, Cheryl Cole and Stacey Solomon along with a host more.  Francine received a standing ovation from the audience and the judging panel when she first appeared on BGT.

With a smouldering talent fuelled by her passion to perform, Ember Rozelle is poised to ignite the music industry. Scotland’s newest and most prodigious singer/songwriter has infused her angelic voice with profound lyrics and a burning desire to deliver a world-class live music experience.

A formidable piano student from the age of seven, Ember has honed her craft in concerts across the country and has entertained some of the biggest names in music along the way; Lionel Richie, Take That, Westlife and Red Hot Chili Peppers to name but a few who have been captivated by her soulful style. Ember is also the Flower of Scotland, having performed for the National Football Team throughout their World Cup Qualifying campaign.
In homage to her roots, Ember’s new single ‘I Won’t Surrender’ captures her pride and passion while providing an emphatic statement of intent to reach the top of her profession.

 

Walking the West Highland Way for LCTF

John Ramage was first diagnosed with Wegener’s Granulomatosis (new name Granulomatosis with Polyangiitis) over 12 years ago after it affected his lungs.  John has raised a significant amount of money for other charitable causes and after reading Lauren’s story he decided to walk the West Highland Way for Lauren’s charity.  In April he set out from Milngavie to walk the 154Km (96 miles) highland route to Fort William. The route starts at Milngavie and passes through Mugdock Country Park, follows the shores of Loch Lomond, passing Ben Lomond, through Glen Falloch and Strathfillan, crossing Rannoch Moor, past Buachaille Etive Mor to the head of Glencoe, climbing the Devil’s Staircase, descending to sea level to cross the River Leven at the head of Loch Leven before entering Lairigmorand Glen Nevis and finishes at Gordon Square in Fort William.  This walk is intense for most so it is a positive and inspirational message that Vasculitis should not hold us back in our pursuits. John was diagnosed early and placed on treatment that has helped to control his Vasculitis and allowed him to pursue projects to raise funds for charity.

 

 John presented his cheque of £1, 250 to Grant Currie on behalf of The Lauren Currie Twilight Foundation.  LCTF would like to thank John for completing this walk on behalf of Lauren’s charity.  A massive thank you to everyone that sponsored John including all his colleagues at First Buses in Glasgow.  The funds raised will help LCTF in their dedicated research projects including our ANCA research in Aberdeen where LCTF fund a dedicated research student for 3 years on Vasculitis studies.

Thank you to Williamwood High School

The Lauren Currie Twilight Foundation would like to thank Williamwood High School for sending us the S6 Yearbook. We want to thank the staff and the S6 year for their three page tribute to their friend Lauren who would have been finishing school tin June 2013. It was emotional to read the loving and heartfelt tributes being paid to her by staff and classmates, especially the quote “she was always smiling – even through her pain” which sums up for us what Lauren was like as a person. She was loved by everyone which is clear from the comments.

We want to thank all Lauren’s classmates and the staff at Williamwood for their support of her charity, the awareness of Vasculitis they created and the funds they have raised for the charity’s work. We also want to wish all of S6 the very best in their life after school.