Quarterly Newsletter… January 2016

We would like to wish you all a Happy New Year and welcome to our new quarterly newsletter where we can update you on news and highlights of the last 3 months and find out what’s planned for the future.

October 2015 was a busy month for the CRPS UK team finalising and finishing off everything in preparation for conference in November. Lots of behind the scenes stuff which took up a lot of our time and energy!!

November 2015 was even busier for CRPS UK as we held the 12 hour cyclathon at Bath University, held our first conference at the Hilton Hotel in Bath, started our new daily article slots on Twitter and Facebook, rejuvenated our Positive Wednesday and organised Community Matters with Waitrose in Swindon. We also welcomed Nichola Cunningham who is publishing content for our Facebook and Twitter accounts and Diane Brook who is helping with the admin of the social media too.

The cyclathon on 2nd November coincided with CRPS Orange Day; worldwide day for recognition and promotion of awareness of CRPS. It was organised by Amanda and raised a staggering £1213.18. The event was opened by the Mayor of Bath and we had several CRPS riders with their friends and family. We were lucky enough to also have some guest riders including Professor Candy McCabe, Dr Jenny Lewis, Jacquie Bailey, staff from Withy King and some Bath University students and staff!



At conference on the 14th we had a great turnout with some very inspirational speakers including Dr Andreas Goebel from the Walton Centre in Liverpool, Professor Candy McCabe from the RNHRD in Bath, Alex Reeves from Charlottes Tandems, Danielle Brown MBE double gold Paralympian and our patron who has CRPS on both feet, Louise Hart from Withy King, Richmond Stace who is a pain specialist with 2 of his UP And Sing past patients. We had talks from Julie Weymouth in her role as expert patient at the RNHRD, from Gillian Boot as a parent of a child with CRPS and from Laura Lock about her experiences of becoming pregnant while having CRPS.


There was even the chance to test drive the new Genny mobility scooter that’s powered by Segway technology (although Danielle seemed reluctant to give it up!), to see Dyson, Amanda Nelsons dog, who was in training to become a DogA.I.D. assistance dog showcase some of his skills, the chance to speak to personal injury lawyers from our sponsors Withy King and to meet staff from AutoMech Cheddar, our other sponsors.

We also raised another £235 on the day from the raffle, pen sales and other donations.

Thank you to everyone who came – it wouldn’t have been such a success if you hadn’t supported us and we look forward to seeing you again in 2016.

If you have any comments or feedback from the conference, please let us know.

Community Matters from Waitrose is a scheme where they select 3 local organisations, every shopper is given a token to place in the box of their choice and at the end of the month all 3 organisations get their share of £1000 depending on how many tokens they get.

All month long CRPS UK was in the lead and we got allocated an amazing £545!


December 2015 gave us a little time to recover from November…it was such a hectic month!!

Off the back of the Community Matters, Waitrose in Swindon offered CRPS UK a prime bag packing opportunity the Sunday before Christmas!! Amanda, Nichola, their friends and family (including Dyson) manned the tills and promoted CRPS to lots of shoppers and staff with their efforts raising another £323!!

Thank you Waitrose…




Good News and Thank Yous

Of course we have many people to thank; including all of you as we wouldn’t be here otherwise!

We especially would like to thank those of you who have already shared their CRPS journey with us – you can read their blogs on our website. We understand this can be a very difficult thing to do but can be quite therapeutic. If you would like to share your journey, just let us know.

Congratulations to Rich Mulholland who was been ordained as a Deacon in November despite his CRPS and by refusing to let it ruin his life.

Congratulations too to Amanda Nelson and Dyson – Just before Christmas Dyson passed his Dog A.I.D.

exams and he is now an official assistance dog.

If you have any good news or thank yous for our next newsletter, again just drop us a line.

The year ahead

We have applied for charity status and our application is being considered by the Charities Commission.

We will be arranging another conference and for those unable to make it, or want more frequent contact, we are looking at setting up regional catch ups where you can pop along for a chat and a coffee.

There are several other ideas being looked into too….watch this space!

Future confirmed dates for your diary…

30th January – Get to Know You afternoon at Jurys Inn Hotel, Custom House Quay, Dublin. 1400 – 1530 (or longer if you want to stay and chat!). Hosted by Fiona Armitage

29th February – Rare Diseases Awareness Day (yes CRPS is one of them!)

7th November 2016 – Colour the World Orange CRPS Awareness Day

Don’t Forget….

You can help 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 that you are happy for us to print, if there is anything you would like to see more or less of, if you have come across something useful or interesting or if you have good news to share then please let us know.

You can contact us in several ways…

Via email admin@crps-uk.org or amanda.nelson@crps-uk.org (for fundraising)

Via the website https://crps-uk.org/contact/

Via Facebook https://www.facebook.com/CRPSUK1/

Via Twitter @CRPSUK


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