logo

headerText

Small Charity Week 2016

 

scw

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.
scw pics1

 

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.

scwpics2

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.

FullSizeRender

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 email us -info@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.

Media preview

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.

Glasgow Support Group

shutterstock_187483523

Glasgow Vasculitis Patient Support Group

Saturday 27th February from 1pm

Glasgow Radisson Blu Hotel

Speaker:  Dr Hilmi

Please note the new venue as the Radisson Blu.  Please contact us for more details on car parking for new venue.  Free Entry & Lunch Served. Bring a Friend or Relative.

2016 Webinar with Professor Wolfgang Schmidt

BSR Webinar 4 - Speaker 1 Slide

 

The BSR 2016 #vasculitis webinar series commences on Tuesday 17th February. 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. Wolfgang Schmidt will be delivering a talk on learning how to scan – with practical tips and techniques 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.

Adrienne’s Fire Walk for Vasculitis

12657293_532622130252268_8587408765507001464_o

This year Lauren would have been 21 and I am determined that her charity, The Lauren Currie Twilight Foundation, will reach its £500,000 goal by her birthday on 27th September. It’s taken a lot of work to get us this far; a few tears have been shed along the way; there’s been a lot of help from some very kind people and we’ve also met a whole new vasculitis family. To help support the essential work of the charity, I’m doing The Walk of Champions Firewalk on Saturday 27th February in the West of Scotland Cricket Club, Glasgow.

If anyone is interested in joining the event on behalf of The Lauren Currie Twilight Foundation then let the charity know by calling 0845 600 5855 or email on info@thelaurencurrietwilightfoundation.org. The charity will cover the joining fee, all you need to do is aim to raise a minimum of £100.

If you are unable to attend but want to support me then please follow the link to my JustGiving page where you can sponsor and help raise funds for #vasculitis research, patient support, public awareness and medical guidance.

JustGiving Link:  https://www.justgiving.com/Adrienne-Currie1/

Thanks Adrienne

2016 Aberdeen Ceilidh In Aid of The Lauren Currie Twilight Foundation

Ceilidh Website BannerThe wee Black & Red family ceilidh is coming to Dyce in Aberdeen on the 16th January 2016 to raise awareness and funds for ‪vasculitis‬ support and research at The Lauren Currie Twilight Foundation. Enjoy a drinks reception, three course meal, raffle and a great night of ceilidh dancing at the Marriott Hotel, Dyce, Aberdeen AB21 7AZ.

The event will include a champagne reception, three course meal, raffle and auction, plus the ceilidh itself. All proceeds will go towards the charity’s objectives: raising awareness of vasculitis, educating medical professionals, supporting patients and researching this rare condition.

Tickets cost £38 for adults and £12 for children, and are available here: http://www.thelaurencurrietwilightfoundation.org/ceilidh-reservation-2016.

Some of the money raised by the ceilidh will go towards vasculitis research at the University of Aberdeen (http://www.abdn.ac.uk/), under the leadership of Dr Neil Basu. To date, the charity has given £62,000 to the university, which has been used to support a three-year PhD research project on vasculitis, alongside a patient support group in the city.

Grant Currie, co-founder of the charity, said, “One shocking thing about vasculitis is that so little is known about it. “We have a public awareness programme that aims to educate both the general public and medical professionals, but our support of vasculitis research is completely vital.

 
We hope to see as many of our supporters from the North East as possible turn out to aid our campaign against vasculitis, celebrate the fifth anniversary of the charity and support the integral work to support patients!”

1 2 3 19