Lauren Currie Twilight Foundation
Why do people give up their free time to help others? What leads us to donate our money to causes rather than spend it on ourselves? Behind every charity I have visited this year are good people, each with their own unique story to tell and this week’s charity, The Lauren Currie Twilight Foundation (LCTF), is home to one of the most inspirational stories yet.
Founders of this charity Grant and Adrienne lost their 15 year old daughter Lauren in 2010 to Wegener’s Granulomatosis, a form of vasculitis which causes an inflammation of blood vessels and can affect organ function. Lauren was suffering from exhaustion, tonsillitis, excessive coughing and nosebleeds but as these symptoms are common to other conditions and vasculitis is more prevalent in older people, the diagnosis from doctors ultimately came too late for Lauren. Vasculitis is a condition every bit as life threatening and debilitating as cancer and yet it is something most of us know little or nothing about.
I cannot imagine what it must feel like to lose a daughter. When the Curries left hospital they did so with a lot of unanswered questions and so they began researching the disease that had taken their daughter Lauren. The Curries soon discovered that there was very little information readily available about the condition but what they did learn was that vasculitis is not terminal as such and that early diagnosis and treatment can allow it to be controlled. Determined to prevent other families from going through what they had and spurred on by Lauren’s strength and positivity in her final days, the couple resolved in the coming weeks to build a foundation for sufferers in her memory. And build a foundation they did. Now seven years on, the charity has become a lifeline for patients of vasculitis funding support groups, awareness, respite, research, medical education and political lobbying.
This is a charity with simple and honest objectives and despite its relative size it is not afraid to aim high, to ask the awkward questions of politicians and to negotiate with TV stations in order to run campaigns raising awareness of the condition. It is thanks to such efforts, that the charity has garnered support from all over the country, counting Dr Hilary Jones and Biffy Clyro amongst its patrons. The Curries are very in touch with the patients they support and after learning more over the years about the financial and emotional impact the condition can have on sufferers, the couple took the enterprising decision to fundraise for a lake side cabin. The respite cabin on the banks of Loch Awe provides patients and their partners with somewhere to go and relax. For many sufferers and their families, the financial impact of this condition can be crippling. Daily battles with fatigue and the side effects of steroids make working full time difficult. Breaks like those at the Twilight Cabin (named after Lauren’s love of the Twilight Saga novels and the charity’s namesake), allow partners and patients to escape such stresses for a few peaceful days.
This week I ventured the furthest North I have been on the road so far to a support group in Aberdeen. The group meets regularly and is 50-60 strong, we were treated to a relaxation session from Andrew Johnson which left me markedly more relaxed before I was invited to do a short talk on my adventures with the Nicest Job in Britain. Over coffees I spoke with some of the group and learnt a little more about the impact of this condition. What struck me most about the day however was the difference the friendship and support makes to vasculitis sufferers and the offshoots that have sprung up from the main group - walking clubs, book clubs and various quizzes and competitions. I had learnt earlier in the week after meeting Carol and Lynn, two sufferers in East Kilbride, just how isolating the condition can leave patients. The volume of steroids and drugs required to keep the condition under control can make a person appear outwardly fine and bright but inside they are battling with pain, ache and chronic fatigue. Relatives and friends often struggle to understand the condition, socialising can be exhausting and after a while invitations simply start to dry up. Lynn described the loss of identity she faced after being diagnosed with the condition and was forced to leave work. Her kids have had to grow up quickly with their mum in a very vulnerable state. Following her operation Lynn tried to return to work on a phased basis but ended up back in hospital. Life is very different these days. For a time she felt lost but finding the Facebook group online became a turning point, neither Carol or Lynn could put into words how good it felt to meet others going through the same things. One thing is for sure, vasculitis sufferers are some of the hardiest people I’ve met this year.
I was lucky enough to accompany Grant on a visit to the site of their latest wellbeing residential. Ardoch is nestled on the shore of Loch Lomond and the stunning stone facade lures you in with an unassuming yet curious exterior. As you step through the entrance and along the flagstone corridor, the sunlight on the loch (english folk read: Lake!) begins to tickle you before you round the corner and are immersed fully into some jaw dropping panoramic views. The vista pulls you in and I could not help but stop and admire the raw beauty of the place. The initiative has been set up by the Ardoch Foundation, with the aim of sharing the beauty of its surroundings with as many people as possible, especially people struggling in life. As such the foundation awards grants to registered charities wishing to make the most of its unique location. Director, Luke, kindly gave us a tour of the elegant rooms and it really is such a peaceful place. The charity’s wellbeing residential which took place this week offers a program of support, therapy, relaxation and socialising and it looks like patients had a fantastic time.
The Curries run LCTF voluntarily and do all of this alongside their full time jobs. They are not afraid to make a nuisance of themselves, lobbying government to put vasculitis on the table and whilst they may irritate Nicola Sturgeon from time to time, there is so much here to fight for. They are the quiet heroes of our country and theirs is a story which has inspired me and being able to tell it, is one of the reasons this is the Nicest Job in Britain.
Thank you to Grant, Martin, Lynn, Carol, Graham, Luke and all of the lovely folk at the Aberdeen support group,
All good things,
P.S. I ended my week with a tribute to my Scottish roots and donned my tartan to take part in the Kilt Walk, a 23 mile hike from Glasgow to Loch Lomond with supporters of LCTF. I roped in my aunt and uncle for moral support and after a poor footwear choice and several saucer sized blisters I needed it! 7 and a half hours later I hobbled across the finish line, thanks in no small part to several pain killers kindly donated by a passing walker and from the support and mockery of my caledonian relations. You can watch a few clips in the video above!