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.