Our story began as a fairly small U.K. non-profit organisation to help those affected by the chronic pain condition Complex Regional Pain Syndrome (CRPS). We are called Burning Nights CRPS Support and today we operate as a fully registered U.K. charity dedicated to CRPS.
The idea for the website and organisation came from the Founder and Chair of Trustees for the charity, Victoria Abbott-Fleming. Victoria has lived with CRPS since an accident at work in 2003 and during the time she has had the condition, she has needed both her legs to be amputated above the knee due to aggressive and extreme symptoms of CRPS. You can read Victoria’s story on her Founder’s page in our website.
So how exactly did Burning Nights CRPS Support all begin?
Burning Nights CRPS Support began as the title for Victoria’s memoir that is in the process of being published and which she has been writing for a few years. The title for the book was drawn from the burning pain that Victoria experienced as a result of the CRPS, a symtpom endured along with thousands of other CRPS sufferers, and because it burnt more at night after the day was over and things calmed down. So ‘Burning Nights’ it was!
After Victoria was told in July 2014 that it was very likely she would need her second leg amputated because of the aggressive and severe symptoms, she decided to create an awareness and information website for CRPS sufferers in the U.K. and worldwide. Before this point in her time, Victoria had been far too poorly with the condition and in hospital so much that there was no possible way that she could do what she wanted to do to help other sufferers and their families, friends, carers and loved ones.
The website, social media and content was finally up and running on 1st September 2014. This was when Burning Nights CRPS Support began.
With Burning Nights CRPS Support now established, we now needed a logo! This proved to be very tricky indeed as we wanted something that wasn’t just the standard orange awareness ribbon that most non-profits and charities use. The design was created by Lindsey McCormack in Phoenix, Arizona USA.
Lindsey is a fantastic graphic designer who works with corporate, non-profit, and charity clients in the USA and worldwide, making her an exceptional person to go to if you are in need of designs! You can see her design work on her Dribbble Profile Page (dribbble.com/lamccormack) (no longer available)
When Victoria finally found a great web design company, Calm Digital, to help fulfill the task of setting up the website, she wasn’t disappointed in her eventual choice. The content for the website was written and one of the main aims for the site, and Burning Nights as a whole, is that all our information is evidence-based, fully referenced and as up-to-date as possible. This philosophy is to ensure that you, the reader, can be assured that the information we give out is accurate and current.
Over time, products and awareness leaflets were added to the website along with an Online Community Forum where CRPS sufferers as well as their loved ones, family members, friends and carers can go and chat with others like themselves who have lived with the condition and who are going through life with Complex Regional Pain Syndrome (CRPS). Burning Nights CRPS Support became a non-profit organisation and we didn’t realise the actual desperate need for our website, information and products from sufferers, family members, and friends as well as the need from the medical professionals themselves.
The social media side of Burning Nights CRPS Support grew and grew and now we have a great set of volunteers and trustees who really get involved and who want to help others cope and deal with the condition either as a sufferer or a loved one or family member.
At the beginning of summer of 2015, after several discussions with a number of people who were wanting to come on board with Victoria, our founder, it was decided to try and create a U.K. charity for Complex Regional Pain Syndrome. The last CRPS charity in the U.K. unfortunately was disbanded in the tax year 2007-2008 and this was the last time the U.K. had seen a CRPS charity. It was felt that the sufferers and their families weren’t being adequately supported, so Victoria started the long road to fundraising, starting off with joining up with Easy Fundraising in May of that same year.
Easy Fundraising is a website where you sign up for FREE and when you shop online - whether you are buyging your weekly grocery shop or annual holiday and travel insurance - you could be raising FREE donations for Burning Nights CRPS Support. There are nearly 3,000 retailers who will donate a percentage of the amount you spend to us at Burning Nights to say thank you for shopping with them, including Amazon, John Lewis, Aviva, thetrainline, Argos, Morrisons, Hotels.com, Vodafone, Amazon, Hobbeycraft, Moonpig, Carphone Warehouse and Sainsbury’s.
It’s really simple and doesn’t cost you anything! Why not join up for free? Go to the Easy Fundraising website!
It was during October 2015 that a chance tweet was sent by us in reply to a tweet by Altaf Patel, a serious personal injury solicitor and Director of Cromptons Solicitors, that we managed to get a meeting with Altaf.
This meeting was so successful that we were offered sponsorship and Altaf joined the board of trustees in addition to Tom Lowe, an accountant from ABS Accountancy who became the charity's the treasurer. We now had our full board of trustees! You can read more about each of our trustees on their own pages.
We are always happy to welcome people who would like to help us with fundraisers, take part in sponsored events, become a Corporate Partner and donate towards the charity and help us to be there for CRPS sufferers and their families, friends and loved ones.
"BURNING NIGHTS CRPS SUPPORT ARE DOING A GREAT JOB! I have just been thinking about Burning Nights and how many people you are helping with your news and advice that you always give. You have a global reach for your site and look at how many people you have helped and provided support to. Burning"
Dr Michael J Cooney
Clinical Director, Calmare NJ
New Jersey, USA
2 June 2016
Every year during the whole of the month of November, we observe International CRPS Awareness Month, starting off with 'Colour The World Orange' day on the 1st Monday of the month. Awareness month is a busy time for the charity and its gets bigger every year!
We held the inaugural meet & greet conference on Saturday 7th November 2015 - a huge success for everyone who attended! We had some great speakers and at times the day became quite emotional. You can watch a short 5 minute video of the highlights of the meet & greet conference on our YouTube channel.
Since then the Annual National CRPS Conference has grown and takes place every year during Awareness Month in November.
We have seen some inspiring and memorable fundraisers in the time since Burning Nights CRPS Support became a registered charity - including Lisa Davis who shaved off all of her hair and raised £1,000! There have been coffee mornings, a curry night, an auction featuring a House of Commons bottle of wine with the signature of David Cameron MP & Prime Minister, a 3-month sponsored beard grow, raffle during the conference, as well as the generous donations from our dedicated supporters! You can read more about our fundraisers on the fundraising page.
The inaugural meet & greet conference event was held at the Birmingham Marriott Hotel on Saturday 7th November 2015. It was a fantatsic day, enjoyed by all! The day included a raffle with great prizes, such as a unique painting by CRPS-sufferer Natalie Sheridan, and the sale of beautifully crafted cupcakes made by fellow CRPS-sufferer Larissa Ralph, who kindly donated all proceeds to Burning Nights CRPS Support.
Burning Nights has held an Annual National CRPS Conference every year since that first event in 2015, including a virtual conference in 2020! Each year is different but the day will typically feature speakers including pain consultants, other healthcare professionals, disability speakers, legal and financial professionals and the personal stories of CRPS patients and their loved ones.
If you’re interested in coming along to our next Annual National CRPS Conference, but you’re not sure, you can find out more about what went on at the inaugural conference on our YouTube channel. When you're ready, get in touch to put your name down and let us know the number of free tickets you would like. At the moment the maximum number of tickets you can ask for is 4.
Burning Nights hosts regular CRPS support groups. Previously, we were able to hold our support groups in Manchester and Central London. We hope to bring back our in-person supports events at some point in the future, so if you’re interested in coming to a CRPS support group in Manchester or Central London please keep an eye on the Events page for details.
If you are interested in running your own support group for CRPS patients and their loved ones in your own local area, please contact us and let us know. We can send you the necessary paperwork and details and can help look for an appropriate space.
As of 13th April 2016, Burning Nights CRPS Support is a fully registered U.K. charity for CRPS.
Charity Registration Number: 1166522 (England & Wales).
We hope that with the help of our supporters, corporate sponsorship and sponsorship from our legal panel that we will be able to create a long term, successful and sustainable charity for CRPS sufferers their families, friends, carers and loved ones.
Thank you to everyone who has helped and continues to support us and to those who are planning to help us grow this important charity.
Last Updated: 20/11/2022