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Five things…

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Five things…

So, it’s less than five weeks until the Black and Red Ball 2016. This year’s headline act is Five. We have encapsulated we do at the charity into five key points. Please take five minutes to read it over.

 

  1. Support Services

LCTF organise patient support groups in Glasgow, Edinburgh and Aberdeen as well and having an online support centre. On our website you will find information on the different types of vasculitis, patient forums, advice on diet, lifestyle and relaxation, as well as a 24hr support phone number.

 

  1. The Twilight Cabin

Since 2013, LCTF has provided funded respite breaks for people affected by vasculitis. Situated near Dalavich in Argyllshire, the Twilight Cabin overlooks Loch Awe provides an authentic log cabin experience which is an ideal base to explore Argyll & Bute and the stunning west coast of Scotland. The cabin is self-catering and can be booked for a weekend or a full week depending on availability.

 

  1. Research

The Lauren Currie Twilight Foundation also funds research. Vasculitis is rare and medical professionals throughout the world are working tirelessly to learn more about the illness, which could lead to quicker diagnosis. Work is also ongoing to improve the effectiveness and efficiency of treatments. LCTF currently fund two projects with the University of Aberdeen – studying the evolution and pathophysiology of autoimmune disease, and a Quality of Life study for people with ANCA-associated vasculitis. We have also contributed to a paediatric drug trial and a diet & nutrition study.

 

  1. Awareness

Raising awareness is hugely important. Vasculitis is rare and can be difficult to diagnose so increasing knowledge and understanding within in the general public and the medical community is crucial. The charity is active on Facebook and Twitter (we blog too)and we organise annual events like the Vasculitis Awareness 5k and our marquee Black & Red Ball. (have you heard? Five are headlining, you should come along). The charity also sponsors educational programmes such the British Society of Rheumatology’s vasculitis webinar series.

 

What is Black & Red

 

  1. Fundraising

The fundraising efforts of our supporters allow us to continue to fund support services and awareness events. So, thank you if you have donated to LCTF at some point. Thank you if you nominated us as your chosen charity. Thanks if you have attended our events and bought tickets. Simply put, we couldn’t do what we do as a charity if it wasn’t for these donations. We are very grateful. The charity is racing towards a milestone of raising £500k and the support of individuals and organisations has been crucial in the last six years.

 

Every little helps, with every social media follower, retweet or mention, awareness and understanding of vasculitis is increased. Please continue to help us amplify our message across the web and through word of mouth because it really makes a difference.

 

So, hopefully these five points have inspired you to help us reach five hundred thousand pounds. Why don’t you sign up for our 5k fun run next year or buy a ticket, or five, for our fifth Black & Red Ball (it’s actually our sixth, but you get the point ), where we have booked Five to perform.

 

Buy tickets for The Black and Red 2016

Black & Red 2016 / Five – PR launch

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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.

 

“We are incredibly privileged to be invited to perform at the Lauren Currie Twilight Foundation annual ball”

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

For Black & Red 2016 tickets…

The Nicest Job in Britain – charity partner

NJB2016

 

The Lauren Currie Twilight Foundation has been chosen as a charity partner for The Nicest Job in Britain 2016.

The Nicest Job in Britain is a charity campaign is organised by Nicestjobs.com and it offers the position of Philanthropy Manager to one lucky applicant. Once in post, the Philanthropy Manager will work with 40 charities (chosen from a shortlist of over 1000) for one week each. In it’s second year, The Nicest Job in Britain provides a platform to highlight to great work that goes on in the charity sector all over the UK.

 

“We have built a showcase platform for Britain’s charities, demonstrating the great people that work in the wonderful organisations, the environments they operate in and the challenges they face” (Nicest Job in Britain, 2016).

The Nicest job in Britain generates great exposure for the charity sector. Media outlets such as Good Morning Britain, the Washington Post and the BBC have covered this great initiative in the past. Our partnership will be a great opportunity to increase awareness of our charity and the services available for people affected by vasculitis in Scotland and beyond.

 

I always find it hard to put into words how much the Nicest Job in Britain changed my life. The overwhelming experience changed me so much as a person that I can’t see the world in the same way I did before. Profound. Knowing there is so much good in the world brings a new level of meaning to your life.

                                                Luke Cameron (Philanthropy Manager, 2015)

We are delighted to be involved are we are looking forward to the coming months to see this partnership develop. This years Philanthropy Manager will be appointed on November 1st, and the project will begin soon after.

For more information visit The Nicest Job in Britain.

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…

Small Charity Week 2016

 

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June 13th-18th was #Smallcharityweek, a great initiative organised by FSI (the Foundation of Social Improvement). Small Charity Week celebrates the contribution of the UK’s small charity sector who make an invaluable contribution to the lives of individuals, communities and causes across the UK and the rest of the world.
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Each day of the week had a theme exploring different aspects of the charity sector. There was also a week-long #ilovesmallcharities competition which was a fine opportunity for small charities to raise awareness and spread the message of what they do.

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It was great to see the supporters of LCTF get behind the charity in huge numbers across Facebook and Twitter. Thanks to all who got involved and to those who encouraged participation. And a special thanks to all the photographers! The unseen heroes of the week. Your help to increase awareness of vasculitis and the charity is so appreciated.

Thank you.

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A ‘drone’ selfie taken at Elie Beach

 

Follow LCTF on Twitter

http://smallcharityweek.com/

 

The Lauren Currie Twilight Foundation is a charity focused on providing support to people affected by Vasculitis. The charity organises annual events to raise awareness of this rare condition and to raise funds for our patient support services and for scientific research.

If you want to discuss our support services or awareness projects then call us on 0845 600 5855 or visit www.thelaurencurrietwilightfoundation.org.

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!

 

Research update – from Spring Newsletter 2016

This week’s Blog is an article from our Spring Newsletter by PhD student Catriona Walls.  LCTF help fund this research at The University of Aberdeen.

Research at The University of Aberdeen is well and truly underway, now in its third year.  Our initial aim was to create a system where we would be able to study live immune cells from patients who suffer from ANCA-associated vasculitides (AAV), these include Microscopic Polyangiitis (MPA), Eosinophilic Granulomatosis Polyangiitis (EGPA, or Churg-Strauss) and Granulomatosis Polyangiitis (GPA, or Wegeners).

In healthy individuals, antibodies are produced in response to infection and serve to protect that person the next time they encounter that same infection.  These antibodies will stimulate immune cells to mount a response against whatever pathogen has entered the body, usually eradicating the problem swiftly and without too many problems.  Patients with AAV produce antibodies and inappropriately stimulate immune cells to ‘attack’ blood vessels.  Blood vessels are required to deliver oxygen to all organs in the body and so any damage can affect these organs and that is why we see such devastating symptoms in Vasculitis.

The system we have developed essentially mimics what we believe to be the key players in damaging the blood vessels.  By taking the live immune cells from patients we can see how these cells behave in a 4D environment and discover whether they are different from a patient who has been newly diagnosed vs entering remission or relapsing etc.  Being able to distinguish between stages of disease means that doctors who treat patients can alter medication to potentially prevent a relapse from occurring or reduce side effects of such medication.

There are several different immune cells behaviours that we are interested in.  These include:

Degranulation – the release of toxic enzymes from white blood cells, usually after interaction with ANCA.

Migration – how quick and far a white blood cell moves on the surface of the blood vessel lining cells?

Transmigration – do the white blood cells move through the blood vessel lining and which way do they go, for example directly through the middle of the cell or in between two cells?

Particle uptake – how much of the white blood cell contents can be seen inside the blood vessel lining cells?

Serum analysis – We want to know levels of cytokines and chemokines (chemicals which allow cells to communicate with each other) in the blood of patients and healthy donors.

This image shows a monocyte (white blood cell) in the process of degranulation. Notice the small granules – these contain enzymes which degrade and damage the blood vessels.

We have seen differences already between the behaviour of immune cells from patients compared to healthy donors.  The immune cells from patients are more active in all the parameters we analyse, which is what we would expect to see.  This is great news as it means that the system we have developed does the job we want it to.  The next step is to repeat the samples from our current patients.  This will give us a comparison against different disease stages from the same patient and allow us to build up a profile of immune cell behaviour.

There has been a great response from patients at the clinic and on the ward who are willing to donate their blood to help in our research.  Without their participation we would be unable to do any of this work so thank you for getting involved.

 

Related link:

Funding for student and research into rare disease

 

 

Rheumatology 2016 – SECC, Glasgow

Last month, from the 26th-28th April, the LCTF team were busy at the British Society of Rheumatology‘s annual conference at the SECC in Glasgow. #Rheum2016 brought together over 2000 rheumatology patients and professionals from more than 50 countries.

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A conference with a view.

The conference allowed the latest developments and innovations in rheumatology to be showcased, and over in the Charity Village it was an excellent opportunity to network with consultants, doctors and nurses in the field, explaining what we do as a charity and ultimately enhancing awareness of vasculitis in that community. Tuesday also allowed us to reach out to vasculitis patients and bring our services to their attention. We spoke with professionals from as far afield as Turkey as well as people directly affected by vasculitis from all over the UK.

Vasculitis was featured in Wednesday’s interactive workshop entitled ‘Assessing Disease Activity and Damage in Vasculitis’. This workshop was close to the Charity Village so it gave the speakers/facilitators and attendees a chance to swing by our stand to say hello. It was especially good to see Professor Raashid Luqmani, Professor Bhaskar Dasgupta and Dr Richard Watts who have recently taken part in BSR’s recent vasculitis webinar series which is sponsored by The Lauren Currie Twilight Foundation. Our sponsorship of this initiative was also showcased at the Trainee reception on the Wednesday evening.

Media preview

The LCTF stand. No3, The Charity Village

Over the three days, visitors to our stand were very interested in the support services provided on our website and at our Patient Support Groups throughout Scotland. However, it was our Respite Cabin that seemed to grab the attention of most passers-by. The Twilight cabin is positioned in a truly stunning location overlooking Loch Awe in the Scottish Highlands and is well equipped to offer a comfortable self-catering break for up to 6 people. The Twilight cabin provides an authentic log cabin experience which is ideal as a base from which to explore Argyll & Bute and the stunning west coast, or just to relax for some well-earned respite. The Lauren Currie Twilight Foundation funds the Twilight Cabin as part of our patient support services. The cabin provides weekend or mid-week breaks for anyone diagnosed with vasculitis, or families mourning the loss of a loved one through vasculitis.

Rheumatology 2016 was also a great opportunity to meet like-minded people working for charities in the sector. Our conference ‘neighbours’, Lesley and Eve from AKUSociety shared their experiences of working in the charity sector and we met representatives from PMRGCA Scotland, a Charity focused on spreading awareness of two specific types of vasculitis – Polymyalgia Rheumatica and Giant Cell Arteritis. We also met Shanali Perera who was exhibiting her inspiring artwork. Shanali was training as a rheumatology nurse when she was diagnosed with vasculitis. Since then, she has explored the role of art and its potential therapeutic benefits to people with rheumatic and musculoskeletal conditions. She discussed that although art therapy is often used and championed in the mental health area, it often goes overlooked as a tool to help manage more physical conditions.

 

 

 

 

 

Notes – The Lauren Currie Twilight Foundation is a charity focused on providing support to people affected by Vasculitis. The charity organises annual events to raise awareness of this rare condition and to raise funds for our patient support services and for scientific research.

If you want to discuss our support services or awareness then call us on 0845 600 5855 or email us -info@thelaurencurrietwilightfoundation.org.

2016 Webinar with Professor Bhaskar Dasgupta

BSR Webinar 4 - Next Webinar Slide2

The BSR 2016 #vasculitis webinar series on 23rd March with Professor Bhaskar Dasgupta. This webinar series is sponsored and produced by The Lauren Currie Twilight Foundation on behalf of the British Society for Rheumatology. The webinars are a guidance lecture for Consultant Rheumatologists, Trainee Doctors and Allied Health Professionals.

Prof. Bhaskar Dasgupta will be delivering a talk on Practical Implementation of GCA Fast Track Service for Rheumatologists on the diagnosis and assessment of vasculitis. The webinar will be chaired by Professor Raashid Luqmani and Dr Richard Watts.

The Lauren Currie Twilight is committed to improving the outcome of vasculitis.

2016 Webinar with Professor Raashid Luqmani

BSR Webinar 4 - Next Webinar Slide

The BSR 2016 #vasculitis webinar on 2nd March with Professor Luqmani. This webinar series is sponsored and produced by The Lauren Currie Twilight Foundation on behalf of the British Society for Rheumatology. The webinars are a guidance lecture for Consultant Rheumatologists, Trainee Doctors and Allied Health Professionals.

Prof. Raashid Luqmani will be delivering a talk on The Main TABUL Results for Rheumatologists on the management of vasculitis. The webinar will be chaired by Professor Dr Richard Watts.

The Lauren Currie Twilight is committed to improving the outcome of vasculitis.

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