Patient stories submitted to the Lauren Currie Twilight Foundation to support awareness and education of Vasculitis.
Patient stories submitted to the Lauren Currie Twilight Foundation to support awareness and education of Vasculitis.
A big congratulations to Alice Biggar who has been hired as National Philanthropy Manager at NicestJobs.com, also known as The Nicest Job in Britain 2017.
We mentioned this a few months ago as we were delighted to be chosen as one of the 40 Charity Partners for the project. We observed the recruitment process with great interest as we knew we would be working with the successful applicant. It looked to be an exciting process.
“Our aim with The Nicest Job in Britain is to highlight all the great work that people do up and down the country. Yes, we have created one (nicest) job, but there are many thousands of people (in full time roles and volunteers) who do incredible, inspiring & heart-warming things every single day and we want to showcase them.” – Gary Blowers, Creator, The Nicest Job
We are delighted to be involved in NJB 2017, and we look forward to working with Alice in April 2017.
Click here to visit the Nicest Job in Britain blog
Late summer/early autumn is usually a busy period at LCTF as all the planning and preparation goes into The Black & Red Ball. This year has been particularly busy as a few other initiatives were launched to coincide with our annual fundraising event.
Over 250 guests supported LCTF at the Radisson Blu in Glasgow for this year’s Black & Red Ball. Classic boyband Five, X- Factor star Nicholas MacDonald and GAMTA provided spectacular entertainment on an evening that raised over £14,000 for the charity. It is great to see so many people return to the B&R year on year as it proves to be a fantastic night out as well as an effective fundraiser and awareness event for a worthy cause. Guests enjoyed a champagne reception before taking their seats for a three-course meal and the night’s entertainment.
This year’s Ball had a extra purpose this year, it was the opportunity to launch not just one, but two fantastic initiatives that have been months in the making. Firstly, the new Vasculitis Scotland website went live. www.Vascuitis-Scotland.org is the new platform and identity for the support services arm of The Lauren Currie Twilight Foundation. The new website contains information on vasculitis as well as access to support group news and events.
TV awareness campaign #jointhedots
In addition to the website launch, those at The Black & Red Ball witnessed the premiere of our first TV awareness campaign. Our new advert ran on STVWest, STVGlasgow, STVEdinburgh during the first two weeks of October. Increasing awareness of vasculitis is one the the key objectives of the charity along with providing support services and funding research/education. Each of these three objectives are hugely important and work in harmony with one another. We feel this campaign targets two groups – people unaware of vasculitis and people who may benefit from our support services. TV was an ideal, high profile platform to raise awareness of both vasculitis, and the services our charity provide. The advert also acts as a short awareness video for use online.
Overall, The Black & Red 20116 was a huge success. Many thanks to those who attended, helped out with the planning, those who donated on the night or through the online auction, and those who helped promote the event. This all helps us to do what we do.
Watch the advert here – https://www.facebook.com/thelaurencurrietwilightfoundation/videos/1236187916404522/
Ayrshire Business Week
On October 4th, LCTF attended Ayrshire On Show, Ayrshire Business Week’s networking conference. As you may know, LCTF is registered in Ayrshire so it was great to engage with local businesses in the area. It was very encouraging to hear and see that so many people were aware of the charity (and that people caught the advert on TV!!). It was a useful days work, with connections made that could lead to projects in the future.
This quarter’s Support Group theme is Carers. We were delighted to be joined by The Carers Trust at the support group in Glasgow. We received some useful information on the support available to carers and some of the issues affecting this area. This information will be put on Vasculitis-Scotland.org soon. We will be joined by local carer organisations at our support groups in Aberdeen (22nd Oct) and Edinburgh (5th Nov).
In four weeks the popular 1990s boy band Five will be performing at a milestone event for the Lauren Currie Twilight Foundation. The Glasgow Radisson Blu Hotel will play host to the event on Friday 16 September 2016 which will see the charity reach its £500,000 donation mark.
Following the success of last year’s highly popular event, which featured The X Factor winner Shayne Ward, the Black & Red Ball has confirmed Five as its headline act. The boy band rose to fame in 1997 with their debut single “Slam Dunk (Da Funk)”which claimed the number 10 spot in the UK singles chart before becoming the NBA’s theme tune. They later went on to release tracks such as “If Ya Getting Down”, “Everybody Get Up” and “Keep On Movin’” which have become some of the most recognisable tunes from the era.
The group have sold 1.6 million albums, 2 million singles in the UK and 20 million singles worldwide. They have also received 18 awards including Best Pop Act (BRIT Awards, 2000), MTV Select Award (MTV Europe Music, 1998), Best Newcomer (Silver Clef, 2000) and Best Music Act on a Reality TV Show (National Reality TV Awards, 2013).
In 2001 the boy band went their separate ways but have since regrouped to perform multiple tours in the UK and Australia. In 2014 Five supported McBusted for four shows on their tour. The band, now consisting of original members Ritchie Neville, Scott Robinson and Sean Conlon, continue to tour and perform together. Five regularly appear at charity events to help raise money for good causes and raise awareness.
Speaking ahead of the event Five said, “We are incredibly privileged to be invited to perform at the Lauren Currie Twilight Foundation annual ball, especially at an important celebratory milestone.
“Lauren’s parents have been spectacular in creating this wonderful event to raise awareness of vasculitis and we are excited to be part of the great work they have achieved.”
The Lauren Currie Twilight Foundation was created by Grant and Adrienne Currie following the death of their 15-year old daughter and only child Lauren in 2010. Lauren had suffered from 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.
Lauren’s father Grant Currie said, “This is a very special year for us as this September would have been Lauren’s twenty-first birthday. Lauren adored popular music and we are extremely thankful to have such an acclaimed and popular band perform at our Black & Red Vasculitis ball. We want to raise the profile of vasculitis on an international level within the medical community and the general public. By encouraging earlier diagnosis, it will reduce cases of severe organ damage and save lives.”
Vasculitis is the inflammation of blood vessels. When blood vessels are inflamed they reduce blood flow to tissues and organs. Any blood vessel can become inflamed and can affect any part of the body. Due to this there are numerous types of vasculitis each with different symptoms. The cause of vasculitis is usually unknown but it can sometimes develop from a previous infection. It is an uncommon illness and can affect people of all ages.
– An excerpt from a News Release authored and distributed by Famous Publicity
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 2016
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.
G-Mag @City 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.
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!
Vasculitis 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.
Kilmarnock Football Club
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.
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.
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/
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!
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.
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.
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.
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!