Welcome to our second quarterly newsletter where we can update you on news, articles and highlights of the last 3 months.
January gave everyone a time to relax a bit after Christmas and the New Year and for us to get the all-important charity application paperwork double checked and sent off to the Charities Commission. Our fingers certainly got sore from all the crossing of them in the hope that they would approve our application.
We held behind the scenes meetings to try and start arranging regional meetups, business plans, discussing options around conferences and all the “boring” but essential paperwork and official bits and bobs.
After all the finger crossing and dotted I’s and crossed T’s, all the hard work from the co-founders and the team as well as guidance from our sponsor Withy King we got the news back from the Charities Commission……
CRPS UK is ]the first, specialist Complex Regional Pain Syndrome charity in the UK. This will enable us better to encourage research, provide awareness at many levels, including primary care where many with the condition get hugely delayed diagnoses, and also obtain funding so that we can help you better and be able to aid more people with travel costs to get specialist treatment at the RNHRD in Bath. We are hoping at a later date that we will be able to fund more people in other centres around the UK so watch this space.
We are all immensely proud of this status and thanks to all of you too – our sponsors, followers, likers, community members and friends/family of those with the condition and anyone else we’ve missed out; without you all we would not be here so thank you for your continued support.
February also saw the first of many fundraising events of the year take place…
Isabel Cunningham’s Sponsored Row
On the 13th, 12 year old Isabel Cunningham wanted to arrange a sponsorship event for us as herMum has CRPS and she wanted to get her Scout fundraising badge. She was setting herself a goal to see how far she could row on a static rower in 30 minutes.
She completed her event and did fantastically well, managing to cover the equivalent of 4355 metres and raised £160 – Thank you Isabel
Rare Disease Day
The 29th of February saw the annual Rare Disease Day where there is a bigger push for awareness of rare diseases, CRPS being one of them.
We increased our postings on Facebook and Twitter and have made some useful contacts within the rare disease circle.
This is an annual even held on the last day of February; perhaps you can think of a way to help promote CRPS for then?? Let us know what you come up with and we can help where possible.
March was quite a busy month events wise…
Regional Meetup – Birmingham
The 6th saw us hold the first of this year’s regional meet ups being held at The Figure of Eight in Birmingham city centre.
It was a successful afternoon where we got to meet many of you, you caught up with others you’ve met before at conference, new friendships made and generally and chatty afternoon. It was great to see all of you there and of course other family members who came along too. Thank you for making it a success!
Steve Motley & Katherine Earle’s Marathon effort.
The 13th March saw Steve and Katherine run the Bath Half Marathon. It’s a great run through the city centre with a fantastic atmosphere. Steve was running in support of Hannah Moore, one of our CRPS UK community and Katherine was running in support of a younger family member with the condition.
Both runners completed the course in very respectable times. Steve managed to raise in excess of £800 and Katherine £265 – thank you both; your hard work is very much appreciated!
Sam Hills Harbour Ride
The 20th saw 14 year old Sam Hill and her dad cycle 25 miles around their local harbour. Sam herself has CRPS in her foot which makes cycling difficult for her. Prior to her fall which caused the CRPS, Sam was very active with sports so set herself the cycle challenge to fundraise and spread awareness.
They both completed the ride with a great homecoming at the end. https://www.facebook.com/teri.hill.5/videos/10153672598551137/
Thank you Sam and dad for managing to raise £200
Wesley O’Callaghan’s Skydive
For his 18th Birthday, Wesley decided to jump out of a plane in aid of charity as his mum has CRPS. All went well, the parachute opened and there was a safe landing despite a long delay to going up thanks to the British weather. For those who want to see more, here is the link to his video… https://www.facebook.com/wesoc1/videos/1144982095526410/
Thank you Wesley for managing to raise £245 which is being split between us and Sport Relief
Fundraising can be done by anyone doing just about anything you want to; from sponsored silences, sporting events, no TV days, cake sales, boot sales, individually, as a team, indoors or out…the options are only limited by your imagination and ability or lack of as the case may be.
Just let us know what you’re doing, when and where and we will help as much as possible as well as provide sponsorship forms. Every penny really does count…thank you.
Child and Young Persons Mini Conference
Our first Child and Young Persons conference is being held on 7th May in the chapel at the Royal National Hospital for Rheumatic Diseases in Bath from 10:00 until 16:00. There will be several inspirational people coming who specialise in providing services and support for CRPS in younger people. There will be an hour for lunch (included) where you will also have a chance to mingle and ask questions. Registration is needed to secure your place and it’s free of charge. Under 16’s will need to be accompanied by an adult and spaces are on a first come, first served basis. Please email admin@CRPS-UK.org for a place. Booking closes 23rd April 2016.
Wheelie Good Walk for Pain
This is being organised by Roz who is one of our CRPS community and is hopefully going to be the first of an annually occurring event. The idea is to get as many of the CRPS community, our family and friends to join in with a sponsored walk/wheel/scoot/crutch to help raise awareness of CRPS, fundraise and have an afternoon meet up. Hopefully the weather will be nice and this years event will be in her home city of Bath and will take in the 2 tunnels. Registration is needed to ensure adequate refreshments are available half way through via the A Wheelie Good Walk for Pain Facebook page (use the search bar) or online at http://rhjones19.wix.com/walkitrollit
What does it mean?
Looking on the forum and support pages there are lots of technical terms being used which many of the more “experienced” know but which may be confusing or new to others. Not everyone is comfortable asking what things mean. This section will look at different technical words/phrases and try to explain them in an easy to understand way.
This quarter will focus on Allodynia…
Allodynia literally translates as “other pain” and it originates from over sensitisation of the central nervous system often due to the bodies inflammatory response to an injury. Allodynia is when something causes pain to you that normally wouldn’t, such as a bed sheet, sock or even just a puff of air. Or it can be used to mean pain that is felt in a different part of the body that is close to the part being stimulated. It is estimated that between 15 and 50% of people with neuropathic pain will suffer with allodynia.
There are 3 different types of allodynia: Thermal, tactile and mechanical; based on the modality of pain. Thermal allodynia is caused by heat or cold; tactile allodynia is caused by touch or other senses; mechanical allodynia is usually caused by pressure or pinprick
With regards to treatment options these are usually based around medications and desensitisation techniques
Future dates for your diary…
24th April – Victoria Appleby’s sprint triathlon
27th & 28th April – Naidex 2016, Independent Living event at Birmingham NEC
7th May – Children and Young Peoples mini conference – booking essential
5th June – Wheelie Good Walk For Pain organised by Roz Jones
18th June – Regional meetup at All Bar One, Bath – booking details coming soon
2nd July – 3 Peaks Challenge by John Clarke and friends
7th November 2016 – Colour the World Orange CRPS Awareness Day – a little way off yet but if you’re organising something shopping centres, supermarket bag packing slots, getting public buildings lit orange etc. get booked up quickly so need to be arranged soon.
There are a few other things being organised in the background and once the details are confirmed then details will be posted…they are quite exciting!!!
You can also raise funds for CRPS UK without it costing you anything extra via Easy Fundraising – https://www.easyfundraising.org.uk/causes/crpsuk/
If you have any ideas or hints and tips you would like to share, a personal journey you think would be useful to others or if there is anything you would like to see more or less of or just want to say hello then please contact us…
Via the website https://crps-uk.org/contact/
Via Facebook https://www.facebook.com/CRPSUK1/
Via Twitter @CRPSUK
We also need to thank our generous sponsors; without them we would never have been able to get to where we are today