Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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Three Lakes Challenge

Three Lakes Challenge Fundraiser   2 gentlemen - Graham and Michael - will be taking on the Three Lakes Challenge fundraiser in a canoe in aid of Burning Nights CRPS Support over the next few months.   Graham's step-daughter is a Complex Regional Pain Syndrome (CRPS) sufferer and is also one of Burning Nights CRPS Support's trustees. The 2 men will canoe across the longest lakes in Wales, England and Scotland which are: Bala Lake Loch Awe Lake Windermere Three Lakes Challenge - Graham and Michael   Their first lake has already been completed at the end of April and they are hoping to complete their second late towards the end of June. Please show your support for these men battling against the British weather by making a small donation to their fundraiser via their Three Lakes Challenge Fundraiser link. GOOD LUCK GRAHAM AND MICHAEL!   Last Updated: 22/05/2017 LET'S SPREAD AWARENESS of CRPS! 

November is CRPS Awareness Month 2017

Worldwide

November is CRPS Awareness Month 2017   For the whole month of November across the world we will be recognising International CRPS Awareness Month 2017!    For the last 19 years CRPS awareness month has been going on around the world to try and raise awareness for Complex Regional Pain Syndrome (CRPS) formerly Reflex Sympathetic Dystrophy or RSD. The more people including the public, medical and legal professionals are made aware of Complex Regional Pain Syndrome will help those living with the chronic condition to get diagnoses and treatment started sooner.   CRPS Awareness Month November 2017 | Burning Nights CRPS Support charity     If we as a CRPS charity can help just 1 (one) person affected by this chronic condition or make 1 person aware of the effects of CRPS then we have made a difference. So how can YOU help us to raise awareness for Complex Regional Pain Syndrome?   HOW YOU CAN HELP RAISE AWARENESS FOR CRPS Here are some ideas of how you can help raise awareness for Complex Regional Pain Syndrome (CRPS):   Sign up to our Thunderclap message - Are you on Facebook, Twitter or Tumblr? If so, you can sign up free to our one (1) Thunderclap message for CRPS awareness month which will go out on 30 November 2017 at 12 noon. We are aiming to get the hashtag CRPS trending on the final day of Complex Regional Pain Syndrome awareness month. Please help and support our campaign! Buy any of our CRPS awareness products - Leaflet | Postcard | Wristband | Bookmark | Enamel Badge | Pen | Notepad and Pen set ... We're including a FREE CRPS information leaflet for every order during November 2017!   Talk to your local MP about the condition and how it affects you and about Burning Nights CRPS Support charity Speak to your local Town Hall or Library and ask them to light their building orange as Manchester Town Hall did last year and are doing this year, as are First Direct Arena and Blackpool Tower Talk to your local Doctors' surgery or pain clinic about putting some of our CRPS awareness leaflets or A4 posters in their waiting rooms, to try and reach out to anyone who may be affected by Complex Regional Pain Ask your local school/college to give a brief speech to their pupils to give them an idea of what CRPS is, the symptoms and how it affects you Provide a brief article for your local newspaper Ask to give an interview on your local radio station Hold a coffee morning Hold a fundraiser - See our fundraising page for ideas. We can support your fundraiser by sending you A4 posters for your event, A5 flyers & t-shirts are available Ask your friends and family to post on social media about you and your CRPS story or share our website Check out our CRPS Awareness Month page!     HEALTHCARE & LEGAL PROFESSIONALS & STUDENTS For health and legal professionals as well as student healthcare professionals we provide Complex Regional Pain Syndrome (CRPS) awareness and information sessions which are currently free to those in the NHS. These sessions are individual and bespoke information and awareness and are usually from 1 hour in length up to half day events. Please contact Victoria Abbott-Fleming the charity's Founder and Chair who provides these CRPS awareness sessions. We can also send your department, clinic or company with CRPS information leaflets for both patients and professionals alike as well as an A4 poster advertising the charity and its frontline services. Please contact us if you'd like us to send you a small supply.   SCHOOLS, COLLEGES & UNIVERSITIES We can also provide CRPS information sessions to any schools, colleges and universities who may have students who live with CRPS. The schools and colleges session gives you an idea about the condition as well as practical tips and advice on dealing with a student with CRPS. Please email our founder Victoria who provides these sessions.     LEARN MORE ABOUT COMPLEX REGIONAL PAIN SYNDROME (CRPS) You can learn more about Complex Regional Pain Syndrome (CRPS) via pages within our website, such as: WHAT IS CRPS? HISTORY OF CRPS HOW CRPS IS CAUSED CRPS DIAGNOSIS & PROGNOSIS CRPS SIGNS & SYMPTOMS CRPS TREATMENTS   You can also find more information and support about living with CRPS in our blog area. Here we have a couple of blog series: Alternative Therapy for CRPS and Persistent Pain Psychological Treatments for CRPS and Persistent Pain   As well as our CRPS Pain Diary, Coping with CRPS/RSD, Acceptance of CRPS/RSD, Dorsal Root Ganglion (DRG) Stimulation treatment for CRPS, Amputation for CRPS and other blogs on various topics on life with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.       WHAT'S GOING ON DURING NOVEMBER - CRPS AWARENESS MONTH? We have a few fundraising events as well as landmarks and town halls that are supporting us by changing their lights to orange. Why not check out our events calendar to see what's going on and where during November - CRPS awareness month? In addition to those fundraising events we also have 3 landmarks who have kindly agreed to change their building lights to orange in support of CRPS awareness month:   MANCHESTER TOWN HALL - Manchester Town Hall will be lighting up their beautiful town hall building on Thursday 2nd November 2017 for the 3rd year running. Thank you! FIRST DIRECT ARENA - The First Direct Arena will be changing their outside arena lights to orange on Monday 6th November 2017 which is Colour The World Orange Day. Thank You! BLACKPOOL TOWER - Why not go along to the Tower on Wednesday 8th November 2017, take some photos and share them with us on social media?! Thank You Blackpool Tower!   Here are some images of Manchester Town Hall who have supported CRPS awareness month over the last 2 years:     Making people aware about CRPS is the key to getting the condition properly recognised across the world. It could help ensure that sufferers are correctly diagnosed and treated when they visit their GP's, doctors and hospitals. There are so many ways that you can try and get the message across to people […]

Occupational Therapy Show 2017

NEC Birmingham North Avenue, Birmingham

Occupational Therapy Show 2017 It's that time of year again! The Occupational Therapy (OT) Show 2017 will be at the NEC in Birmingham and Burning Nights CRPS Support charity will be exhibiting there once again on Stand E85!   The Occupational Therapy Show is considered to be the UK's largest dedicated event aimed at Occupational Therapists (OTs). This year it's taking place on 22 & 23 November 2017 at the NEC in Birmingham. Interested in coming along to the Occupational Therapy Show 2017 and meeting some of the Burning Nights CRPS Support charity's team? You need to register for your ticket but this is easily done via the Burning Nights CRPS Support bespoke registration link.   Here are some of our photos from the Occupational Therapy Show 2016  If you do visit our stand (Stand E85 Burning Nights CRPS Support charity) at the Occupational Therapy Show 2017, please speak to our team about our CRPS awareness sessions and put your name down. After the show we will be in contact with you by email to discuss the awareness sessions in more detail. If you don't get the chance to speak to any of our volunteers at the Occupational Therapy Show 2017 but you're interested in our CRPS awareness sessions, please email Victoria our Founder who will give you all the necessary information. Look forward to meeting you at Stand E85!  Burning Nights CRPS Support, the UK charity dedicated to raising awareness and supporting all those affected by Complex Regional Pain Syndrome (CRPS) will be exhibiting at this year's Occupational Therapy Show 2017 at the NEC, Birmingham. You can find us on STAND E85   Occupational Therapy Show 2017 Meet Burning Nights CRPS Support charity on Stand E85   At the Occupational Therapy Show 2017: Access over 100 OT focused and interactive lectures, seminars and practical workshops Over 70 hours of FREE CPD accredited education to choose from Learn from world-renowned speakers and experts Update and refresh your learning across physical, mental health & learning difficulties, children & families and innovation, plus many more hot topics and specialist areas including research sessions and the poster zone Research and source new products and services through a network of 270+ trade exhibitors and suppliers. Occupational Therapy Show 2017   If you want to find more about CRPS, our charity or even about our CRPS training sessions that we offer, then come and visit us on STAND E85 at the Occupational Therapy (OT) Show in Halls 9 and 10 at the NEC in Birmingham, UK! Look forward to meeting you there!   Written: 10/10/2017 LET'S SPREAD AWARENESS of CRPS! 

Giving Tuesday 2017

United Kingdom

Giving Tuesday 2017   Burning Nights CRPS Support joins the #givingtuesday movement to encourage people around the UK to do “good stuff” this Christmas!   Burning Nights CRPS Support has announced it is taking part in this year’s #givingtuesday campaign. The campaign, which began in America, is an antidote to the mass consumerism of Black Friday and aims to get people thinking of others in the run up to Christmas, be it through donating to charity, volunteering or simply helping a  friend, neighbour or family member.     Burning Nights CRPS Support was founded in September 2014 by Victoria Abbott-Fleming, who lives with Complex Regional Pain Syndrome (CRPS) and is a bilateral above knee amputee. They became a registered charity in April 2016. The charity is dedicated to raising awareness & supporting people affected by a poorly understood neuropathic pain condition, Complex Regional Pain Syndrome (CRPS). Read more about how Burning Nights CRPS Support was founded.   CRPS affects 1 in 3,800 people in the UK which is approximately 15,000 newly diagnosed cases every year, which doesn’t account for those who may have been undiagnosed or misdiagnosed. CRPS can cause a person to experience persistent, severe and debilitating pain. The condition may develop after an injury, surgery, stroke or heart attack, but the pain is out of proportion with the severity of the initial injury or trauma. The cause of Complex Regional Pain Syndrome isn’t clearly understood and CRPS awareness in the UK is low.   Burning Nights CRPS Support provides a range of frontline services to help those affected by CRPS, including helpline, online forum, email & social media support, range of information and awareness products designed to help people understand the effects of CRPS annual conference, regional support groups, Access to legal support Provide interviews and volunteers for interviews in the media and on social media Assist in CRPS research projects and surveys and help to provide volunteers and awareness sessions for schools, the public, health & legal professionals.   We’re self-funding and rely entirely on fundraising and donations.There are a few ways you can help & all that’s needed is a couple of hours a week either as a volunteer or helping us fundraise.   For every order made via our online CRPS shop on Giving Tuesday only - Tuesday 28 November - we will give you not only one of our CRPS information leaflets FREE but also a metal button pin badge AND 1 of our folded CRPS information and awareness card per order to one address*! (*Ts & Cs apply)   If you'd like to fundraise for Burning Nights CRPS please contact us and we will send you a fundraiser supporters info pack. Here are some ideas: You could do a coffee morning, Talk at your local school/college, Ask local businesses/library/shops/supermarkets to see if they will put up our A4 charity information posters Speak to your GP/Pain specialist/physio/OT/solicitor & ask if they'll include our CRPS information leaflet in their surgery/clinic/office. If your GP, physio, OT or pain specialist wants to include our leaflet in their surgery please give us their name and address and we will send the leaflets direct to them.   Since its inception in 2014,  #givingtuesday has become one of the biggest events in the global charity calendar, breaking successive Guinness World Records for the most amount of money donated online to charity in 24 hours. In 2016, £48 million was donated online via PayPal with the UK accounting for the second largest amount of donations. An estimated 4.5 million people in Britain also did something to support a good cause on the day.   In 2017, more charities and brands than ever are backing the day, including hundreds of local charities alongside household names such as Cancer Research UK, Sue Ryder and Movember, and brands such as EE, House of Fraser, BT and RBS. It also garnered support from leading celebrities including: Richard Branson, Cara Delivigne and Tom Daley.   Victoria Abbott-Fleming, Founder and Chair of Burning Nights CRPS Support said:    "As a UK CRPS charity we provide support to anyone affected by this life-changing chronic neuropathic pain condition, Complex Regional Pain Syndrome and to do that we rely entirely on fundraising and donations. By donating a small amount can go a long way. For £5 we can give leaflets and support to 2 people affected by CRPS. For £25 we can keep our telephone helpline running for 1 month. So perhaps instead of sending Christmas cards this year why not donate the money to Burning Nights CRPS Support? We appreciate every penny and pound that is donated to the charity."   Ben Russell, Director of Communications at  CAF, said:     "Giving gifts is a big part of most peoples Christmas celebrations and because of this, it is no wonder that Black Friday has become such a feature of the Christmas calendar. However, while many of us will be sharing presents with loved ones this year, millions more will spend it alone, hungry or worse. The aim of #givingtuesday is to get people thinking about others this Christmas and doing little things that can make a big difference. It could be donating money to charity, volunteering in your community, or something as simple as offering to help a neighbour. If we all do something small this #givingtuesday, it could make a real difference to millions of people."   THANK YOU! On behalf of the charity and all those we support we would like to give our thanks to all those who have fundraised for Burning Nights CRPS Support and also all those who have donated to the charity. Any money that is raised goes towards our campaigns to raise awareness of Complex Regional Pain Syndrome, help keep the telephone helpline going and provide CRPS information to those in need of help.   If you'd like to take part in the Giving Tuesday 2017 campaign please remember to use the hashtag #GivingTuesday If you would like more information on how to fundraise for Burning […]

1st Annual General Meeting (AGM) of Burning Nights CRPS Support

St James' Place Wealth Management 7th Floor, Sunlight House, Quay Street, Manchester

1st Annual General Meeting (AGM) of Burning Nights CRPS Support   Burning Nights CRPS Support   Notice of Meeting   NOTICE IS HEREBY GIVEN that the 1st Annual General Meeting (AGM) of Burning Nights CRPS Support charity will be held at the offices of St. James Place Wealth Management, 7th Floor Sunlight House, Quay Street, Manchester M3 3JZ at Tuesday 28th November 2017 at 2pm - 4pm to transact the following business:   AGENDA Apologies for absence Welcome Chair’s report for the year ending 31st March 2017 Treasurer’s accounts and report for the year ending 31st March 2017 Any Appointments/Re-Appointments of Trustees Any other business Close of AGM   By order of the Board of charity trustees Victoria Abbott-Fleming Chair of Burning Nights CRPS Support 15th November 2017   If you would like to attend the 1st Annual General Meeting (AGM) of Burning Nights CRPS Support charity please contact Victoria, the Chair of Burning Nights CRPS Support and let us know. There is limited space in the conference room. If you are coming to the AGM and you are in a wheelchair or scooter please let the charity know.   Written: 15/11/2017

Local Charities Day 2017

United Kingdom

Local Charities Day 2017   In 2016, the Local Charities Day was launched across the UK by the UK Department of Digital, Culture, Media and Sport (DCMS). Local Charities Day 2017 is returning again this year and will take place on Friday 15 December 2017.   Local Charities Day 2017 - Support Burning Nights CRPS Support | UK charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)   According to the DCMS blog, the Local Charities Day 2017 is to highlight the work of small charities like Burning Nights CRPS Support that are making remarkable differences in their communities. The Local Charities Day will also give some recognition to the unsung heroes and celebrate the commitment of amazing volunteers who devote their time to improving the lives of others.   As the founder and Chair of trustees, I would personally like to say a huge thank you to all the trustees, volunteers and supporters who give up their time or provide support and services to Burning Nights CRPS Support charity to help us achieve our aims and objectives.       Want to be involved in the Local Charities Day 2017 on Friday 15 December 2017? Here are some simple and easy ways you can be involved and to support Burning Nights CRPS Support: Post on social media using the hashtag #LocalCharitiesDay Don't forget to Retweet or share our posts about the Local Charities Day 2017! You can also support the work that Burning Nights CRPS Support charity does either by fundraising for us, making a one-off or regular donation to help us keep all our campaigns running or why not consider volunteering with us? You can spend a couple of hours every week volunteering with the charity and not only is volunteering very rewarding but you're also supporting the Burning Nights CRPS Support charity as well. You can also download the Local Charities Day 2017 poster image and put them up in your local shops, library, GP surgery or community board! Local Charities Day 2017 - Supporting Burning Nights CRPS Support poster 1 Local Charities Day 2017 - Supporting Burning Nights CRPS Support charity Poster 2   Please support Burning Nights CRPS Support charity on Local Charities Day 2017!   LET'S SPREAD AWARENESS of CRPS! 

Phillip’s Pub Collection

Leicester Ashby-de-la-Zouch

Phillip's Pub Collection   Every year on Boxing Day (26 December) Phillip organises a pub collection at his pub - the Bull and Lion in Leicester. This year is no different. However there is just one small difference in that this year Phillip's pub collection will be in aid of his niece Megan and also in aid of Burning Nights CRPS Support charity.   Megan lives with Complex Regional Pain Syndrome (CRPS) and is in desperate need of a wheelchair. Megan and her family have organised a series of fundraising events starting with Phillip's Pub Collection on 26th December 2017.   Phillip's Pub Collection will be taking place at the Bull & Lion pub in Leicester. If you'd like to go along and support Megan's wheelchair fundraiser please do! GOOD LUCK and MERRY CHRISTMAS! Written: 11/12/2017 LET'S SPREAD AWARENESS of CRPS! 

Rare Disease Day 2018

Worldwide

 Rare Disease Day 2018   Rare Disease Day usually takes place on the last day of February every year around the world and this year is no exception. This year Rare Disease Day 2018 is being held on Wednesday 28 February 2018 and will be the 10th edition. Complex Regional Pain Syndrome (CRPS) is classed as a rare disease which is why we recognise the day here in the UK. Rare Disease Day was introduced into the USA in 2008 by National Organisation for Rare Disorders (NORD). Every year the day grows and grows and it was 2015 that was seen as having the most impact and actually managed to trend on Facebook for the 1st time. For more information about Rare Disease Day, please visit their website - Rare Disease Day The main objective for Rare Disease Day is to raise awareness about the rare disease community and for all the rare diseases which includes Complex Regional Pain Syndrome (CRPS) and especially raise awareness amongst the public about the rare diseases such as CRPS and how it has an impact on your lives as patients.    Rare Disease Day 2018 is a great opportunity to ask researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. (Rare Disease Day)   Join us for Rare Disease Day 2018 on 28 February 2018   According to the Rare Disease website: The United Kingdom has engaged in Rare Disease Day since its beginning in 2008. Taking a political approach, many patient organisations have held receptions and debates focused on rare disease policy in local and national parliaments.   Every year there are more and more events taking place all over the world on Rare Disease Day - do you have an event on Rare Disease Day 2018 that you would like seen placed here? If so CONTACT US and let us know!   Last Updated: 15/02/2018 LET'S SPREAD AWARENESS of CRPS!

London Marathon 2018 – David Drew

London marathon London

London Marathon 2018 - David Drew This year we have 2 runners in the London Marathon 2018 including David Drew. David will be running in the London Marathon 2018 in aid of Burning Nights CRPS Support charity! London Marathon 2018 - David Drew to run in aid of Burning Nights CRPS Support     David has already begun his training for the London Marathon 2018 and we will be posting his photos when we receive them. The London Marathon 2018 is on 22 April 2018 and is a 26.2 mile course around the centre of London from Blackheath all the way to London Bridge and finally The Mall. David has decided to complete the London Marathon 2018 in aid of Burning Nights CRPS Support because of all the work he does through his company - Abbott - who manufacture the Dorsal Root Ganglion (DRG) stimulators and Spinal Cord Stimulators for those who have been diagnosed with Complex Regional Pain Syndrome or CRPS.     Not sure what CRPS is? Why not visit our What Is CRPS? page and learn more about this debilitating condition? If you'd like to make a donation no matter how small or large to David's London Marathon 2018 event please visit his LONDON MARATHON fundraising page! We are all behind David at the London Marathon 2018! Go for it David and good luck with the training! Don't forget if you can support David by making a small donation to his fundraiser because every penny and pound counts.   Best Of Luck David from All the Burning Nights CRPS Support team! Written: 11/12/2017 Last Updated: 12/03/2018 LET'S SPREAD AWARENESS of CRPS! 

London Marathon 2018 – Craig McAllister

London marathon London

London Marathon 2018 - Craig McAllister As you can see in our events calendar, we have 2 men running in the London Marathon 2018 including our charity ballot place runner - Craig McAllister! London Marathon 2018 - Craig McAllister running in aid of Burning Nights CRPS Support charity     Craig is our charity ballot place runner in the London Marathon 2018 and he has chosen to run the London Marathon because of his best friend, Simon who had lived with Complex Regional Pain Syndrome (CRPS) after an accident at work and has sadly since passed away 3 years ago. We are certain that Craig will do Simon's memory proud when he runs in the London Marathon 2018.   The London Marathon 2018 is on 22 April 2017 and is a 26.2 mile course around the centre of London from Blackheath all the way to London Bridge and finally The Mall. Would you like to know more about Complex Regional Pain Syndrome (CRPS)? Please visit our What Is CRPS? page to learn more about this debilitating condition. If you'd like to donate to Craig's London Marathon 2018 event please visit his LONDON MARATHON fundraising page!   Burning Nights CRPS Support is behind Craig at the London Marathon 2018! Don't forget if you can support Craig by making a small donation to his fundraiser because every penny and pound counts. Good Luck Craig from All the Burning Nights CRPS Support team! Written: 11/12/2017 Last Updated: 04/047/2018 LET'S SPREAD AWARENESS of CRPS! 

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