Twilight sponsored walk for the Lauren Currie Twilight Foundation

The Lauren Currie Twilight Foundation are holding a ‘Twilight in the Park’ event in support of vasculitis sufferers in the UK on the evening of Saturday 13 June 2015. The 5km Twilight sponsored walk will be followed by an exclusive outdoor cinema. 

LaurenCurrieTwilightFoundationWegenersDisease

The walk takes place in Glasgow’s Pollok Country Park, and the route goes through darkened woods which were voted part of Europe’s Best Park in 2008. It will be followed by a giant 24ft pop-up cinema screening of a secret blockbuster film.

Tickets cost £10 for adults and £5 for children. Fundraisers go free. Adults raising a minimum of £50 and children raising a minimum of £25 for The Lauren Currie Twilight Foundation will get free entry.

The Lauren Currie Twilight Foundation was set up by Grant and Adrienne Currie following the tragic death of their 15-year old daughter and only child Lauren in 2010. Lauren had suffered from Granulomatosis with Polyangiitis (formerly known as 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.

Because vasculitis is uncommon and early diagnosis is an important factor in the effectiveness of medical care, public awareness of the condition is one of the charity’s main objectives.

As well as educating the general public, the charity educates medical professionals on how to spot and diagnose the disease.

We want as many people as possible to take part in this great walk and raise money for our objectives. The funds will be used to advance research into the relatively unknown condition vasculitis.

“The Twilight in the Park walk and film are a great way to honour Lauren and celebrate her life. It’s also going to be great fun and an unusual social event for those who like to help others.
— Grant Currie

If you live near Glasgow and would like to get involved, please visit the Lauren Currie Foundation website for further information.

The Future of Vasculitis Video - Part 1

I came across an interesting video today, produced by the Lauren Currie Twilight Foundation, that I thought I'd share with the Wegener's community. I previously blogged about the Lauren Currie Foundation in this post.

On the 22nd January 2015, The Lauren Currie Twilight Foundation hosted a live three part online webcast to discuss the future of Vasculitis.  The aim was to have an in-depth discussion about vasculitis and to answer such questions as - Which research studies are running for vasculitis?  Has our understanding of the disease developed? Are we closer to understanding what triggers or causes vasculitis? What improvements have been made in the last 10 years and what are the targets for the future? 

The Lauren Currie Twilight Foundation invited highly respected vasculitis experts and researchers to our webcast panels for each discussion.  The webcast panel presented and shared their own research projects’ objectives, findings, understandings and goals.  As this was a live event, viewers were free to ask questions at the end. 

The guest panel for part 1 includes Dr Alan Salama & Neil Basu.

Dr Alan Salama is a Consultant and Leader in Renal Medicine at the UCL Centre for Nephrology, Royal Free Hospital in London. Dr Salama has a specialist interest in immunological kidney disease, specifically systemic vasculitis. He runs a busy vasculitis clinic and a research laboratory investigating mechanisms of immune regulation in systemic vasculitis and glomerulonephritis.

Dr Neil Basu is a Senior Clinical Lecturer & Honorary Consultant Rheumatologist at the University of Aberdeen.  Dr Basu oversees the Aberdeen vasculitis clinic and has a specialist research interest in systemic vasculitis.  Dr Basu’s research projects have included Epidemiology of multi-system autoimmune diseases, Investigation of rheumatic fatigue and more recently, patient wellbeing studies focused around ANCA associated Vasculitis.

This webinar also provides details on research projects currently funded by The Lauren Currie Twilight Foundation and Vasculitis UK who are both actively working to improve research in vasculitis.

Due to restrictions on the video I an unable to embed it in this blog post but if you would like to watch it, please click on the link below.

I'll be sure to link to parts 2 and 3 of videos when they are published. In the meantime I'd encourage you to take a look at the other videos on the Lauren Currie Vimeo channel and check out their website.

Wegener's Disease resources - Lauren Currie Twilight Foundation

Wegener's Disease resources Lauren Currie Twilight Foundation

Today I am shining the spotlight on the Lauren Currie Twilight foundation. This is the heart-breaking story behind the foundation:

Lauren Janice Currie

The 23rd October 2010 will forever be a date etched painfully in our memory. Lauren, our only child, had just turned 15 when she died from Wegener’s Granulomatosis (now called Granulomatosis with Polyangiitis, a variant of Vasculitis). There are very few things worse in life than being told that your daughter, the absolute centre and light of your life, is going to die. Harder still to face her inquisitive eyes moments later and appear confident and reassuring as you try to cram a lifetime of love into a few short moments.

Fortunately Lauren was unaware she was dying and tried bravely and uncomplainingly, while undergoing so many gruelling procedures, to fight her way back to health. Her own determination and positive attitude are what inspires us today to leave a lasting legacy for our beautiful daughter.

The foundation we have created in Lauren’s name also reflects her last obsession – The Twilight Saga. The novels on the bookcase are well thumbed and have been read many times from cover to cover; a sea of posters covers her bedroom walls; a 6ft cardboard cut out of Edward Cullen, which was often planted outside our bedroom door as she delighted in hearing us jump in fright, still stands menacingly in the corner; books, calendars, action figures, t-shirts, cinema tickets, games…. We refused to call our new puppy Edward, so a compromise of Eddie was reached. It seemed only fitting then that the name Twilight was incorporated into the charity. This is Lauren’s charity, founded through our love of our daughter and everything she represented.

She was a bright, intelligent, bubbly, fun-loving girl who infectious laughter affected all around her. It is that daily infusion if hysterical laughter which still rings in our heads. Now… the silence is deafening. There is a huge, vacuous hole which can never be filled.

The days that followed Lauren’s death were spent scanning the internet looking at signs, symptoms and treatments of Vasculitis, only to discover quite incredulously, that this was not a terminal illness. That may actually have been easier to digest. Our beautiful daughter need not have died had her individual symptoms of rhinitis, frequent bouts of tonsillitis, joint pain and lethargy been pieced together.

With this fact in mind, we pledged to ourselves and to Lauren’s memory to support others suffering from Vasculitis. Her charity now raises vital awareness throughout the United Kingdom, as well as producing guidance and support materials for patients with all forms of Vasculitis. It also funds guidance for health professionals, delivers national support groups and funds scientific research.

Her charity has grown in the last two years and has been instrumental in helping us come to terms with Lauren’s death. Seeing other patients receiving support and assistance from Lauren’s charity makes all the hard work and tears in building it so worthwhile. We have been incredibly moved by the support that we have received from people who have been touched by Lauren’s story and the subsequent work of the charity. Thank you, your support has been vital.

Adrienne Currie (Lauren’s Mum)

The Lauren Currie Twilight Foundation has heightened awareness of vasculitis through local, regional and national newspapers, magazines, radio and online coverage since October 2010.  The charity has invested £10,000 per annum to fund greater awareness of the disease as they believe that the earlier vasculitis is detected then the future outcome for patients is greatly improved.  Their awareness campaign strives to raise the profile of vasculitis within the medical community and the general public - encouraging earlier diagnosis will reduce cases of severe organ damage and save lives.

In June 2012, The Lauren Currie Twilight Foundation commissioned an awareness video featuring ITV Daybreak's Health Editor, Dr Hilary Jones and leading consultants; Dr David Jayne (Addenbrook Hospital) and Dr Lars Erwig (Medical Sciences in Aberdeen). This video raised significant awareness of the disease with the general public and with medical professionals.  

The charity organises annual events to raise awareness and help raise funds for their patient support services and scientific research. In 2014 they have arranged 5k awareness Fun Run/Walk events, an awareness 150ft abseil, the Black & Red Gala Ball and radio commercials reaching out to 680,000 listeners to raise awareness of this disease.

In May 2014 they have been running the Give Vasculitis The Boot campaign.

The foundation even has a log cabin that can be booked by those suffering from vasculitis or families mourning the loss of someone with vasculitis.