Newsletter 3 – July – December 2016

Welcome to our third newsletter where we can update you on news, articles and highlights of the last few months.

Before we start we’d like to welcome some new volunteers who have recently agreed to help us with organising events and other bits and bobs. If you’d like to join in too then just let us know. So welcome to Gary, Jo, Sarah and Jane. You’ll find out more about them and the rest of us in our next edition where we will have a “meet the team” feature.

We’d also like to say a big THANK YOU to Philip Riley and his company SOFTtalk Translations for a very generous donation to the charity.

 

July 2016

ProbusJuly saw Amanda and Nichola do the first, of hopefully many, presentation to a small group of people who had never heard of CRPS. Probus clubs are places where retired professional businessmen meet to share ideas, socialise and extend their knowledge to pass on to others in a non-political, non-sectarian way. They were all very interested in what we had to say; so much so that we ran out of time for questions that they wanted to ask us. Many of them did say that the hardest thing to hear was that it can happen to anybody… They did a collection afterwards for us which raised £100 along with promises that they would tell lots of others about the condition.

 

July also saw a fantastic fundraiser, see the fundraising section for more information on that.

 

Augus2t 2016

August saw things behind the scenes tapering off a little so that we could all have a bit of a break before coming back with more energy in September – we all have CRPS too and need to take a break.

 

 

September 2016

September saw the cogs start turning again with the fantastic news that we had “won” a place in the 2017 Virgin Money London Marathon! These places are very hard to get hold of so were very overwhelmed to get one. Needless to say that very soon afterwards we started our campaign to offer the place to find a runner for us….we had more entries than expected so extended the entry date until 31st October – more on that later in the newsletter!

The 10th saw our first Irish meet up in Belfast which, although had a smaller turnout than we’d hoped still brought together CRPSers to socialise and make new friends; which is what these meet ups are all about.3

September also, very behind the scenes, we started looking into improving our website to create a more user friendly, professional and up to date look with lots more information to complement our charity status. If there is anything you’d like to see on it, just message us as admin@crps-uk.org

 

October 2016

October was a fundraising filled month but more on that later! The 31st saw our London Marathon entry deadline.

For those of us volunteering for the charity, it was a very up and down month for most of us so we didn’t quite manage to do as much as we had hoped.

 

November 2016

November has seen things return to “normal” and kicked off with Amanda being invited along to our sponsors (Royds Withy King) to attend a charity information afternoon covering the legalities of being a charity along with an opportunity to liaise with other charity representatives and speci4alist solicitors.

We passed all the London Marathon entry forms to Lynn and Andrew at our other sponsors, AutoMech Cheddar, for them to select who would be running for us so that it was completely impartial.

 

The successful runner is Richmond Stace, a pain physiotherapist from London. He is very happy that he had been selected and is now starting all his preparations and getting his fundraising plan in place so that he can complete the marathon and rise as much as he can for us.

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November also saw the annual awareness day for CRPS and Colour the World Orange awareness events taking place worldwide. Julie, Amanda and Nichola were invited to judge at 3 Royds Withy King offices for the best orange dressed person and unfortunately we had to eat cake too!!! Many thanks to all the Royds Withy King staff who madedonations and/or bought cake for raising £200!

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Rebecca did a live interview on the radio talking about CRPS, which was broadcast on most local radio stations. If you haven’t heard it yet here’s the link via Twitter https://twitter.com/CRPSUK/status/798290659857879040

 

There wer8e many orange lit buildings and landmarks worldwide too including the Blackpool Tower, Niagara Falls, the fountains at Trafalgar Square, the Hudson Bridge in New York, Leeds O2 arena and Swindon central library. Start planning now for next year – in 2017 CRPS awareness day will be 6th November – the first Monday in November.

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Nichola and Amanda also took a trip to Shrewsbury to meet the 3 peaks team to collect their cheque for a fantastic amount (see fundraising9 for more info).

November also saw the launch of our new wristbands and black t-shirts! They have certainly been popular. If you would like to purchase any of the merchandise please see the separate price sheet at the end of the newsletter.

 

 

 

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 newsletter we will focus on atrophy…10

Atrophy can often be a part of CRPS and will develop over time. This major cause of atrophy is not using your affected limb as usual; so much so that the muscle mass of the limb is greatly reduced. It is not always permanent and the muscle mass can be built up again with physiotherapy and use of the limb. It is also thought that nutritional supplements, dietary changes and ultrasound therapy can also help reverse muscle atrophy.

In CRPS pain is usually the reason for not using the limb but stiffness through avoiding use of the limb and dystonia can also cause the muscle mass to reduce.

Most popular Article

Did you know that every day on our public Facebook page, we publish an article which we think would be of interest to you.

Our most viewed article of this quarter was about systemic complications of CRPS with a reach of 1558 people.

http://file.scirp.org/Html/22695.html

 

Fundraising News

11WOW…..! We have had some amazing fundraisers since the end of June. Here is a snapshot of the goings on and hopefully they can inspire you as much as they have us. Fundraising is important to all charities and without these vital funds being raised our charity would cease to exist. Fundraising events can range from cake sales to marathons, dress up days to rock climbing and everything else in between…the key to successful fundraising is to do something you enjoy!

 

13In July we had an amazing group of family and friends complete the Welsh 3 peaks challenge for us as the main organiser of the event, John Clark, said…

“I had wanted to walk the 3 peaks to raise money for CRPS UK for some time as my wife Sandra had developed CRPS after breaking her wrist in September 2014.

Complex Regional Pain Syndrome (CRPS), is a condition which is rated by the McGill scale as the most painful in the world. CRPS is characterised by severe pain, colour and temperature changes, swelling and movement dysfunction. CRPS UK works to help people with CRPS live 12the best lives they can.

We have now a group of 8 walkers (including both my daughters Hayley & Jennifer) who are mainly members of Bannatynes Health Club in Shrewsbury.

We have been training hard since the start of April and have climbed some formidable mountains in all weather conditions, Cadr Idris, Snowdon, Tryfan, the 3 Breiddons, and the Glydders.

The challenge takes place on 2nd July, we leave Shrewsbury at around 6am and will climb Ben Nevis at around 5pm, move on to Scafell Pyke by first light and Snowdon around midday, we will have walked 26 miles and driven over 900 miles by the time we return to Shrewsbury on Sunday evening.”14

 

Needless to say the team completed the challenge despite poor weather conditions and with the support of their friends managed to raise a magnificent £2200. Thank you all so much for your hard efforts and for raising such a great amount for our charity. Amanda and Nichola went to Shrewsbury to collect the cheque and, of course, take a few pictures. Thanks again to John and Sandra for providing us with lunch, drinks and taking Dyson for a walk.

 

 

August and September were fairly quiet fundraising wise too – everybody having a well-earned rest we think!

Throughout October fundraising was back with a bang and a plethora of events!

 

15The 1st saw the start of the 100 miles for pain walk, 3 friends who wanted to do something for CRPS UK due to a mutual friend being diagnosed with the condition last year. The ladies managed to complete the series of walks and raised over £500 including Gift Aid for us…thank you all.

 

 

 

The 2nd saw 2 runner16s raising funds for us…

Stefano Michelini ran the Great Scottish Run – a half marathon in and around Glasgow city centre. Stefanos link to CRPS is via his wife who was diagnosed after a sporting injury in 2014. He wanted to help CRPS UK to raise awareness of the condition and to help fund ongoing support for those with the condition. Thank you for raising over £20017

 

Philip Newton ran the Chester Marathon for us on the 2nd too and his partner was diagnosed around 18 months ago after taking almost a year to get the diagnosis. Seeing what she goes through on a daily basis is his reason for fundraising for us to go towards awareness and possible future research into the condition. Philip managed to raise in excess of £400 so thank you very much.

 

18Helena Stone kindly arranged a charity soup at her family’s local pub in Kineton near Cheltenham. 3 delicious soups to choose from and all the profits came to us as well as on the day donations. Amanda joined her and said it was a great atmosphere with a lovely group of people. Helena managed to raise £260 for us from the lunch, thank you!19

 

 

 

 

20November also saw almost a year of running for charity for Sam Newnham. Her link to CRPS is through her dad who was diagnosed earlier
this year after 2 years of questions and misdiagnoses. She wanted to raise funds to help us spread awareness of CRPS so that others can be diagnosed quicker to prevent others from being so far down the line with regards to the progression of CRPS and still in the dark as to what their condition is. She was also raising funds for the Care of Police Survivors and the Jane Tomlinson appeal. She completed a total of 13 events this year finishing with the Las Vegas Marathon21

 

 

For those who have still to pay in monies, please can you contact Rebecca, as treasurer, to arrange this. Ideally these should be paid as soon as possible the event either by BACS or cheque. Rebecca can be emailed at treasurer@crps-uk.org

Your fundraising and sponsorship efforts are most definitely appreciated. Did you know that these funds go towards things like funding this years’ Child and Young Persons Conference, our regional meet ups and merchandise stock as well as having an amount allocated for research, our patient grant scheme and for increasing awareness within primary care through education and CRPS materials. Unfortunately these things, like all the best things, take time to make sure they’re done in the most effective way, are factually correct and endorsed where possible by leaders in the field of CRPS.22

 

If you are arranging an event, or would like to, then please contact Amanda by email so that she is aware of what is going on, who needs sponsorship forms or needs any further help.

23You can also raise funds for CRPS UK without it costing you anything extra by shopping online https://www.easyfundraising.org.uk/causes/crpsuk/ instore or through the Easy Fundraising app. Ideal for doing your Christmas shopping!! So far we have raised over £200 – so every small, or large, online purchase can soon add up!

 

THANK YOU TO EVERY SINGLE ONE OF YOU WHO HAS ARRANGED, TOOK PART IN AND DONATED TO ALL OF OUR FUNDRAISING EVENTS. YOUR HELP REALLY IS APPRECIATED

 

Social Media

Our communities are growing in size, with lots of new members joining. You’ll find great support, lots of interesting discussions, articles, motivation and information.24

Like all forums there are a wide variety of members in age and experience each with their own opinions and thoughts; this is what really makes it such a fantastic place. Thank you to everyone for their kindness, tolerance and non-judgemental attitudes.

 

 

 

 

 

To join our Facebook support community you’ll find us at https://www.facebook.com/groups/CRPSUKlivingwithpain/

For family and friends

https://www.facebook.com/groups/CRPSUKFriendsAndFamily/

Our Facebook page; for CRPS information and upcoming events. https://www.facebook.com/CRPSUK1/

Our Twitter feed is also gaining momentum and we’re over the 2500 mark now.

Follow us @CRPSUK25

Special thanks…

We would like to thank so many companies for their generous donations of raffle prizes, donations and general assistance: Malmesbury Probus, Waitrose, Tesco, The Royal National Hospital for Rheumatic Disease (RNHRD/The Min), Swindon Libraries, Creative Steam, Danuk, CRPS Network UK and many, many more including our sponsors Royds Withy King and AutoMech Cheddar, without whom we wouldn’t be where we are now.

Upcoming events…

10th December – Christmas Concert at St Oswald’s Church, York

17th December – The Stone families 5km push at the Lee Valley Velo Park, London

25th December – Christmas Day… we hope you have a good one

1st January – New Year’s Day…Happy New Year and let’s hope it’s a low pain one

Early 2017 – Dorset meet up (exact date tbc)

February – Liverpool meet up (exact date tbc)

16th April – Easter Sunday

23rd April – Virgin Money London Marathon

6th November – Colour the World Orange / CRPS Awareness Day

Lots of space for fundraising and raising awareness!

 

How to contact us

Via email admin@crps-uk.org

Amanda for fundraising queries amanda.nelson@crps-uk.org

Rebecca for finance and fundraising payments treasurer@crps-uk.org

Fiona for queries in Ireland (North & South) secretary@crps-uk.org

Via our website www.crps-uk.org

Or through our Facebook pages or Twitter feed

 

Last but not least….

Our co-founders, volunteers and sponsors would all like to wish you all a very (low pain) Merry Christmas and all the best for 2017.

 

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Merchandise Price Sheet

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T-shirts                                £12.00

Misprint T’s*                      £7.00

Tote bag                             £3.00

Everyday band**              £2.00

Good & Bad bands**      £3.99

3 bands**                           £5.00

Pen                                       £1.00

Post and Packing to mainland UK is £3.00

We can deliver elsewhere but please ask for a postage rate before ordering

To Order please contact admin@crps-uk.org

For pen and wristband orders in Ireland, please contact secretary@crps-uk.org

* Misprint T’s have and orange C instead of red

** Bands have free UK P&P if the order is for bands only

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