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Summer 2016 at LCTF

 

As with all vasculitis charities, as Awareness Month in May comes and goes, our work at LCTF continues as ever. Our newest blog post recaps just a few of the things we have been up to over the summer so far.

 

Five @TheBlack&RedBall 2016Five image

We were delighted to book Five to headline our showcase Black & Red Ball 2016. The event is the pinnacle of our awareness calendar. The popular band who won a BRIT Award and had a couple of number One singles are back as a trio we are sure they will play an entertaining, hit-filled show.

Get Black & Red Tickets

 

 

 

G-Mag @CiCml26NrWIAAqGUgty of Glasgow College

The charity was delighted to be chosen as the Nominated charity by NQ Advertising/PR and Fashion students at City of Glasgow College. This was a great opportunity for the charity to raise awareness and engage with a younger age group. The students produced an end of year magazine and launched it at a beach party-themed event. To round off the launch, the students had an Oscar-themed awards bash where they presented the charity with a £450 donation. Thanks to all the students and staff who took part and to everyone who bought the magazine and raffle tickets.

 

 

 

#Smallcharityweek

It was Small Charity Week in mid-June and we went all out to try and win the #ilovesmallcharity selfie competition. As a result, we have lots of new followers across our social networks. Sadly, we didn’t win, but it was a great awareness exercise. There’s always next year!

#ilovesmallcharities blogpost

 

VasculiCl8mmVRWAAAjh5jtis Awareness 5k Fun Run.

The Annual Vasculitis Awareness Fun Run took place at the end of June at Dean Castle Country Park. lots of runners (and walkers) turned out to participate as well as many supporters and volunteers. As usual, the weather held out for the runners to finish the 5k then complete the inflatable assault course. We also had a merchandise stall and a raffle with lots of ‘summer-y’ prizes. All in, over £3000 was raised as well as great online coverage in the Daily Record.

Facebook Gallery – Vasculitis Awareness 5k Fun Run

 

 

 

 

Kilmarnock Football ClubKillie crest

We are excited to develop our ‘associated friendship’ with Kilmarnock FC over the coming season. As you may know LCTF is registered in Kilmarnock, so it seemed natural that we start supporting our local team. The charity logo will be included in the Matchday programme and the hospitality Teamsheet as well as in and around Rugby Park. We may even get to a few games to cheer on Lee Clark and the new-look team this season. We hear the pies are good too, so if you are local, get yourself down and support the team.

 

Support Groups

The theme in this round of Patient Support Groups was ‘a patient’s story’. A special thank you to Eilidh Archibald and Dr Kluth in Edinburgh, Lilian Johnstone and Carol Fisher in Glasgow, and Helen Rose and Catriona Walls in Aberdeen.

 

So it’s been a busy couple of months. But the next few months may be even busier. We are working on two very exciting, ‘top secret’ projects as well as a few other initiatives in the run up to the Ball. But that news is for another blog post.

Until then…

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