Our story began as a fairly small UK non profit organisationto help those affected by the chronic pain condition; Complex Regional Pain Syndrome (CRPS). We are called Burning Nights CRPS Support. We are now a fully registered UK charity dedicated to CRPS.
The idea of the website and organisation was thought of by 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 CRPS, 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?
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Birth of Burning Nights CRPS Support
Burning Nights CRPS Support began as the title for Victoria’s memoir that she is currently getting published and has been writing for a few years. The actual words for the title for the book was because of the burning pain from the CRPS that she felt as a sufferer, along with thousands of other CRPS sufferers and because it burnt more at night after the day was over and things calmed down. So the name ‘Burning Nights’it was!
After Victoria was told in July 2014 that it was very likely she would need her 2nd leg amputated because of the aggressive and severe symptoms she had, she decided that she wanted to create an awareness website for CRPS sufferers in the UK and worldwide. Before this point in her time with the condition, Victoria had been far too poorly 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. So this was how Burning Nights CRPS Support began.
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Our Logo
However 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 does work for clients corporate, non-profit and charities both in the USA and worldwide, making her an exceptional person to go to in the need of designs! You can see her design work on her DRIBBBLE PROFILE PAGE (dribbble.com/lamccormack) Lindsey gave us the logo and all the copyright to it, which meant that we could copyright our beautiful logo here in the UK, which is what we have now.
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The Beginning of Burning Nights CRPS Support
When Victoria finally found a great web design company, Calm Digital, to help her 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 website and for more importantly Burning Nights, is that the everything is evidence based, fully referenced and is as up to date as possible. This is a philosophy of Burning Nights CRPS Support is to ensure that you, the reader, can be reassured that the information we give out is accurate and current.
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 you 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 as well as 3 of the charities’ 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. Here are the links the our social media pages:
At the beginning of summer of 2015, after several discussions witha number of people who were wanting to come on board with Victoria, the founder, it was decided to try and create a UK charity for Complex Regional Pain Syndrome. The last CRPS charity in the UK unfortunately was disbanded in the tax year 2007-2008, this was the last time the UK 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 FUNDRAISINGin May of that same year.
Easy Fundraising is a website that you sign up for FREE with and when you do your online shopping for whatever it is you are buying from your weekly grocery shop to your annual holiday and travel insurance – you could be raising a FREE donations for us at Burning Nights CRPS Support. There are nearly 3,000 retailers including Amazon, John Lewis, Aviva, thetrainline, Argos, Morrisons, Hotels.com, Vodafone, Amazon, Hobbeycraft, Moonpig, Carphone Warehouse and Sainsbury’s, who will donate a percentage of the amount you spend to us at Burning Nights to say thank you for shopping with them.
It’s really simple and doesn’t cost you anything! Why not join up for free? Go to the EASY FUNDRAISING website!
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Eventually Sadie Brunton joined the trustees team and we started to get support from both sufferers and non sufferers who wanted to help and donate, which was great news for us! 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 from Irwin Mitchell who Altaf used to work for! We couldn’t believe it! A large national company wanted to help us achieve our goals and aims of raising awareness of CRPS in the public as well as amongst the medical professions.
Altaf joined the board of trustees as well as an accountant, Tom Lowes, from ABS Accountancy, joined the trustees as the treasurer. We now had our full board of trustees! You can read more on each of our trustees, on their own pages.
We are always wanting people to help us withfundraisers, do sponsored events, sponsorshipand donate towards the charity and help us to help CRPS sufferers and their families, friends and loved ones.
Burning Nights CRPS Support is a fully registered UK charity for CRPS as of 13 April 2016. Our charity number is 1166522 and we are registered in England & Wales.
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 CooneyClinical Director, Calmare NJNew Jersey, USA2 June 2016
There were a number of fundraisers that went on including; Lisa Davis who shaved off all of her hair and raised £1,000! There were coffee mornings, a Curry night, House of Commons bottle of wine with the signature of David Cameron MP & Prime Minister auction, 3 month sponsored beard grow, raffle during the conference, generous donations and much more! You can read about our fundraisers on our fundraising page.
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Annual National CRPS Conference
7 November 2015 was the date of our Inaugural Meet & Greet conference event and we held it at the Birmingham Marriott hotel. It was a fantastic day and everyone enjoyed it! We held a raffle with some great prizes including a unique painting by an artist who is also a CRPS sufferer, Natalie Sheridan and another CRPS sufferer, Larissa Ralph brought some beautifully made cupcakes and she kindly donated the moneyreceived to us. We have held an annual national CRPS conference every year since the first conference in 2015.
We hold our annual national CRPS conference every year usually in November and we bring in pain consultants, other health speakers, disability speakers, legal and financial professionals as well as asking CRPS patients and loved ones or carers to give their patient or family member journey.
If you’re interested in coming along to our next CRPS Annual National Conference but you’re not sure, why not watch a short 5 minute video of what went at our Inaugural Conference! Contact us 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)
CRPS Support Groups
We are currently holding regular CRPS support groups in Manchester and Central London. If you’re interested in coming to our next CRPS support group in Manchester or Central London please keep an eye on the EVENTS page for the date of the next group!
However if you are interested in running your own support group for us in your own local area, please contact us and let us know. We can send you the necessary paperwork and details and we will look for an appropriate space.
And Finally….
Our charity application was successful and we became a registered UK charity dedicated to complex regional pain syndrome in April 2016. Our charity registration number is 1166522.
We really hope that with the corporate sponsorship and sponsorship from our legal panel and any other companies who chose to help us with sponsorship, 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, who is helping and who are planning to help us grow this important charity. This is Our Story!
Why not click on the CRPS/RSD link above and read all about this debilitating and extremely painful long term condition?
Last Updated: 19th May, 2020
2020-05-19
You Have Helped My Family More Than You Know
Burning Nights CRPS Support the charity & support
7 August 2019
Last Updated: 19th May, 2020
2020-05-19
You Have Helped My Family More Than You Know
Hi my name is Lyndsay Turner, my son Ciaran was diagnosed with CRPS about 4 months ago.
The story behind his CRPS is tragic. He was present at the Manchester arena bombing and now 2 yrs later he has CRPS in 1 full leg which he can’t weight bear at all.
I first reached out to Burning Nights CRPS Support after I saw Victoria on Granada ITV Report and after being in a black hole herself, she and her husband have helped guide me in so many ways I am truly grateful for finding this support. The NHS truelly have no real understanding about this condition. I know this as I sat with 15 specialists and they still couldn’t give me the same information or the same support I have had received from Burning Nights CRPS Support.
Me as a mother would highlight Burning Nights CRPS Support as anyone’s go to for information on this horrible debilitating illness.
The information online and over the phone really is reality too. There needs to be more awareness for Complex Regional Pain Syndrome.
Lastly I would like to thank not only Burning Nights CRPS Support but Victoria and her husband Michael for all their help and leaflet information. You truly have helped my family more than you will ever know.
You Have Helped My Family More Than You Know
Last Updated: 7th August, 2019
2019-08-07
Thank You!
Social Media Support
7 August 2019
Last Updated: 7th August, 2019
2019-08-07
Thank you! I find the information shared is invaluable and helpful. Thank You.
Last Updated: 27th February, 20212021-02-27 Rare Disease Day 2021: Danielle’s CRPS Story How a rare disease robbed me of m...
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