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!
Spooky Halloween Fundraiser Party This Halloween is going to be 'spooktacular' in Peel Hall, Manchester when a group of family and friends put on a Spooky Halloween Fundraiser Party not only in aid of Burning Nights CRPS Support, but to also raise awareness of Complex Regional Pain Syndrome after a young family member developed this debilitating chronic condition. Spooky Halloween Fundraiser in aid of Burning Nights CRPS Support **UPDATE** The team of volunteers behind the Spooky Halloween fundraiser have raised over £1,128! This is a phenomenal amount and congratulations to everyone involved including all the residents of Ashway Park, Manchester. Thank You all for your generosity! The Spooky Halloween fundraiser party on 31st October 2017 will have plenty going on during the evening including a BBQ, street party games, bouncy castle, music and a raffle! It'll be a fantastic event and raising awareness of CRPS will also be important as well as having fun. If you're a local business and you'd like to donate any prizes for the raffle please contact us and we will forward your request to the organisers. We hope the group of family and friends who have a member of their group affected by CRPS have a great night and a Spooktacular time! Written: 06/10/2017 Last Updated: 23/12/2017 LET'S SPREAD AWARENESS of CRPS!
November is CRPS Awareness Month 2017
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 […]
THE 3rd ANNUAL NATIONAL BURNING NIGHTS CRPS SUPPORT CONFERENCE The Burning Nights CRPS Support FREE 3rd Annual National Burning Nights CRPS Support conference event is on Saturday 4 November 2017! 3rd Annual National Burning Nights CRPS Support Conference Due to the amazing successes of our last 2 Annual Burning Nights CRPS Support conference events in 2015 and 2016, our 3rd annual national CRPS conference is being held this year on Saturday 4th November 2017 and due to popular request it will be held in the South at the Marriott Bexleyheath, Kent (DA6). UPDATE: This event is now full! However we have a cancellation list in place now, so if you'd like to attend our Complex Regional Pain Syndrome UK conference to gain support and CRPS information please contact us and we will put your name down, email address and number of tickets you'd like if you are successful in the event of people cancelling. Here's all the necessary details within this event page that you'll need for this year's annual national CRPS conference: Essential information Speakers Getting Your Tickets Raffle Auction Staying At The Hotel Parking At The Hotel Check out our short 5 minute highlight video of what went on during our Inaugural Burning Nights CRPS meet & greet event: Our last year's Burning Nights CRPS Support annual national conference was held at the Manchester Marriott hotel in September 2016. Here's what went on last year: Prefer to read about our event last year? Why not check out our 2nd Annual Burning Nights CRPS Meet & Greet Conference blog or check out our Inaugural Burning Nights CRPS Meet & Greet blog?! If you are interested in coming along to our 3rd Annual National Burning Nights CRPS Support Conference please fill in the RSVP box below this event and event details. DETAILS DATE: Saturday 4th November 2017 TIME: Starting at 9.30am and finishing around 4pm (You are free to come and go as you like) COST: FREE!! WHERE: Marriott Bexleyheath hotel, 1 Broadway, Bexleyheath, Kent, DA6 7JZ LUNCH & REFRESHMENTS: Both lunch (sandwiches including vegetarian option, salad bar and fries) and refreshments are FREE for you during the day's event. The Marriott Bexleyheath is a wheelchair and disabled friendly hotel. The bar, restaurant and some bedrooms are on the ground floor. There are some rooms on upper floors and the conference room is on the 1st floor which is accessible via lifts. SPEAKERS: This year we have 4 confirmed speakers who are: Mr James Fitzgerald, a neurosurgeon who regularly implants the Dorsal Root Ganglion stimulators for CRPS sufferers Dr Chris Jenner, Consultant in Pain Medicine specialising in CRPS from the London Pain Clinic - Dr Jenner is a very well qualified doctor with a number of years experience in pain medicine including Complex Regional Pain Syndrome (CRPS). His talk will be an overview of CRPS and the available treatment options Chris Edwards, Motability Operations - Chris will be giving a talk on the Motability scheme, how it works, what is available etc. Mr Rob Warren, Clinical Director of Plexus Healthcare - Rob's talk is entitled 'How best to use your OT - What they do and what they can do for people with CRPS' To learn more about each of the confirmed speakers this year, please visit our 3rd Annual National Burning Nights CRPS Conference blog. CRPS CARERS & SUFFERERS SPEAKERS We are looking for CRPS carers and sufferers who would be willing to give a short talk about their lives either living with CRPS or as someone who cares/loves someone with CRPS. If you're interested in speaking at our 3rd Annual National Burning Nights CRPS Support Conference please get in touch with us and let us know. HOW TO GET YOUR TICKETS: We only have a limited number of 100 places for our very popular annual national CRPS conference, so get your name on our list early to avoid any disappointment! Please click on the RSVP Ticket box below the map and details of the event to give the following information: how many tickets you would like (maximum of 4 per person), your name, email, RAFFLE & AUCTION This year, we will be holding 1 raffle and 1 auction on the day of the conference! The raffle will take place and drawn on the day of the conference and will only be available to those attending our CRPS support conference. UPDATE - Due to the Collapse of Monarch Airlines we have suspended the sale of raffle tickets as of Monday 2nd October 2017. We are now looking into the possibility of obtaining a similar prize from another flight company. If this fails then we will be in contact with everyone who has purchased tickets to let them know of the situation and to offer you a refund. The auction will also take place on the day of the conference and will be finalised on that day. The winning bidder must pay for their item on the day of the conference. The item will not be given to the winning bidder until it has been paid for. We are able to accept cash, PayPal or a bank transfer on the day. RAFFLE PRIZES Check out our blog for this year's 3rd Annual National CRPS Conference in Bexleyheath for more information on this year's raffle prizes so far! If you know any companies who would be willing to donate a raffle prize to us please contact us If you are part of a company or you own a business and would consider kindly donating a prize to our raffle, please contact us! All the money raised on the day will go towards the charity. AUCTION We have been generously given 2 fabulous items that we will be auctioning off on the day of the conference! Those attending the conference will be able to bid for these items on the day. Payment MUST be made in full on the day and items won't be released until payment has been received. You are able […]
Colour The World Orange Day ™ 2017
Colour The World Orange Day ™ 2017 Colour The World Orange Day ™ is an annual event which is always held on the 1st Monday of November every year, to spread awareness of Complex Regional Pain Syndrome (CRPS). This year is the 4th annual event of Colour The World Orange Day™ and it will be held on MONDAY 6 NOVEMBER 2017 all around the world! It is also known as #CRPSORANGEDAY™ It is held during November because November is seen as CRPS awareness month. We need all the awareness we can get for this debilitating chronic neuropathic pain condition, so please unite as one family, whether you are a CRPS sufferer or carer, family member, loved one or friend, wear something ORANGE and post your picture together with the hashtag #CRPSORANGEDAY™ across social media. Let's get #CRPSORANGEDAY™ trending across all of the social media channels! CRPS Awareness Month | Colour The World Orange Day | CRPS Awareness Day There are a huge number of ways that you can get involved in Colour The World Orange Day™ such as contacting your local MP or Council and let them know about Complex Regional Pain Syndrome (CRPS), also referred to as Reflex Sympathetic Dystrophy (RSD) and how it affects you and your life. To learn more about CRPS visit any one of our pages within our website such as What is CRPS? or buy some of our CRPS leaflets to give to your Doctor's surgery or local hospital (with their permission). Why not visit our CRPS Awareness Month page to get some ideas on how to help raise awareness for CRPS? If your local GP, specialist or hospital would like some of our CRPS leaflets for their building, please contact us with their name, Practice name and address and we will get some leaflets sent directly to them from our charity. For the last 2 years running, Manchester City Council kindly changed the colour of the Manchester Town Hall's lights to ORANGE for 1 day during CRPS awareness month of November. They are going to be doing the same again this year - Thank You Manchester Town Hall! Here are some of the photographs taken from the last 2 years: We are hoping to try and get more Councils and more Town Halls involved this year. If your local Council or local town has a building or structure that has lights at night shining on it please contact us and let us know, or contact them yourself. You could let them know who you are, what CRPS awareness month is all about and what you'd like them to do ie. change the colour of their outside lights to orange. Don't forget to have a look through our website page that's dedicated to CRPS awareness month. For more information about the Colour The World Orange Day ™ please visit the organisers' website, where you can find the 2016 Press Release, information on how to raise awareness, the Colour The World Orange Day ™ pamphlet and sign. If you would like to do any fundraising activities or events during November; CRPS awareness month, or at any other time please contact us! There are some ideas for how to raise money on our Fundraising Ideas & Tips page. If you do any shopping online why not join our charity cause on EASY FUNDRAISING? It's a FREE way of raising money every time you go shopping online via the Easy Fundraising website or app. Let's try and make the 4th year of Colour The World Orange Day™ not only a fantastic day but also the best year yet for raising awareness of Complex Regional Pain Syndrome! Don't forget to post your pics in our comments section below and on social media, of you and your family, friends or neighbours wearing orange using the hashtag #CRPSORANGEDAY™ or #CRPS Last Updated: 22/08/2017 LET'S SPREAD AWARENESS of CRPS!
The 8 Bighearted Railwaymen
The 8 Bighearted Railwaymen This November during CRPS awareness month a fantastic group of men known as The 8 Bighearted Railwaymen will be challenging themselves in aid of Burning Nights CRPS Support, to loop the UK non-stop from Liverpool Lime Street station by train and ferry where necessary throughout England, Wales, Southern Ireland, Northern Ireland, Scotland and back to England in as short a time as possible and they are hoping in less than just 3 days! The 8 Bighearted Railwaymen Fundraiser in aid of Burning Nights CRPS Support On 13, 14 and 15 November 2017 the team of 5 railway men will be travelling non-stop throughout the whole of the United Kingdom and Southern Ireland. They will start and end of Liverpool Lime Street Station and they are aiming to do this non-stop journey in less than 3 days which is an amazing and challenging fundraising event! The 8 Bighearted Railwaymen - The team The 8 Bighearted Railwaymen team will be raising money in aid of Burning Nights CRPS Support charity and they will obviously be raising awareness of Complex Regional Pain Syndrome and indeed one of the team is a CRPS sufferer themselves, so this will be no doubt a painful event for them. If you would like to make a donation to their challenge fundraising event please visit The 8 Bighearted Railwaymen fundraising page. Their fundraising page will be open until 15 February 2018! We wish every member of the team all the very best and GOOD LUCK for your challenge! Written: 04/10/2017 LET'S SPREAD AWARENESS of CRPS!
Occupational Therapy Show 2017
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
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 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