The NRAS Blog

One small step for NRAS, one giant leap for foot health!

noreply@blogger.com (NRAS) — Fri, 25 May 2012 10:58:00 +0000

Hi all

Well, it’s been a very busy year so far, and I can’t believe it’s May already! I’m getting married this September, so I’m starting to panic at how fast the year is whizzing past. Another reminder of how quickly my special day is approaching came last weekend, when I attended my friend Laura’s wedding. I know that some of you have called our helpline in the past, and some will no doubt have spoken to Laura, who worked on the helpline for a year before leaving us to become a foster parent last year, which she is finding to be a difficult but very rewarding experience. She will no doubt be enjoying her relaxing honeymoon now, but who needs Miami when we’re experiencing an early British Summer here?

You’re probably all aware that the helpline team takes phonecalls and emails from anyone with queries about RA that contacts our society, but you may not be as aware of some of the other work that our helpline team does. One of our major responsibilities is in the management of our publications. We have been working hard to ensure that all of our information gradually falls in-line with the information standard scheme that we joined last year, and we are also responsible for uploading all of the information in the ‘Rheumatoid Arthritis’ section of the website, and one of the most exciting information projects that I have been involved in this year is our new section on foot health.

We have been aware for some time now that there was a need for more information on feet, footwear and general foot health for people living with rheumatoid arthritis. As many of you will know, the smaller joints in the hands and feet are the most commonly affected by RA, so feet can be one of the biggest problem areas for people with this disease, and it is not always very easy to find shoes that support the feet without compromising on style. Nobody knows this better than our chief executive, Ailsa Bosworth, who has RA herself, so has experienced this problem first-hand. This is why she has been working hard alongside podiatrists at Salford University and other healthcare professionals to create this new section on our site.

Once they’d done all the hard work, it was my job to source some of the images, design the page layouts and upload the information to our site, with help from some of my wonderful reader-reviewers, whose feedback helped me to get the information to the highest standard before the pages went live. My small contribution has made me particularly proud of how the new section has turned out, and I hope you will all find it useful. If you haven’t seen it on our site yet, follow the link below:

www.nras.org.uk/about_rheum...

I hope that many of you have been to our website and have found the information useful and as always I look forward to speaking to some of you on the helpline in the future.

Hope the weather’s good where you are!

Victoria
(NRAS Helpline & Information Coordinator)

High mountains and a tough run

noreply@blogger.com (NRAS) — Fri, 18 May 2012 12:53:00 +0000

Hi all,

My evaluation of the helpline and NRAS groups is finally drawing to an end. For those who were kind enough to take part I want to say a big thank you as it has been a fantastic help to the charity. We collected some great data which showed us that NRAS services really do make a difference. It’s also helped to inform us how to develop our services in the future.

I had the privilege of presenting my findings to representatives from the Rank Foundation, a trust which helps to fund NRAS and other charities a couple of weeks ago in Blackpool. It was a great couple of days which gave me the opportunity to meet other interns and hear about what they’d been up to. I also got to take a couple of cheeky dips in the hotel pool courtesy of Rank which was an added bonus!

All the fun of Blackpool was quickly followed by a couple of weeks in sunny San Francisco. I managed to take in the island of Alcatraz, art galleries, festivals, Golden Gate Park and a little too much shopping. The highlight for me though was a three day stay in Yosemite national park. I maintain that nothing compares to waking up surrounded by the fabulous Yosemite Mountains – even if the thought of bears and mountain lions roaming nearby did make me a little nervy!

I returned to the office to be hit by the bombshell that it’s only seven weeks until I’m running the 10km NRAS run! At the last count 30 minutes left me red in the face and very, very tired. I’m now officially in training and trying to limit my consumption of biscuits for the next few weeks. It’s definitely going to be tough. Wish me luck, cross your fingers and think of me charging round the park most evenings as I try and make up for lost time...

Take care and enjoy yourselves,

Sarah
Data Analyst and Research Intern

May the fourth be with you!

noreply@blogger.com (NRAS) — Fri, 11 May 2012 10:04:00 +0000

Hello from the newest member of the NRAS team! I joined 7 weeks ago as the new Membership Supervisor and have received such a warm welcome from everyone at NRAS.

I had known of NRAS for a few years before I joined, mainly through a few of my family & friends who suffer with RA, and feel incredible privileged to be working for such an amazing charity.

Our members are incredibly important and we are ever closer to reaching 4,000 members! The more members we have, the bigger impact we can have in raising awareness about RA, enabling us to carry out the essential services we provide. If you are not already a member and you are interested in joining, please call either myself or Gail in the membership department on 0845 458 3969 or email membership@nras.org.uk – become a member and let your voice be heard!

As many of you cannot fail to avoid – it’s Olympic year! Hurrah I hear you say! When I’m not working at NRAS, I’m involved in the Dorney & Eton Ambassador programme who are recruiting and training local people to help out during the Olympic rowing events at Dorney Lake (in our ‘colourful’ pink and purple uniforms!). The Ambassador programme has now created over 11,000 volunteers around the country and I am now one of 500 trained volunteers who will be available to help their local community, before, during and after the Olympics. So perhaps the Olympics will leave a lasting legacy after all...

Just a few weeks ago I had the opportunity to spend a very sunny (and slightly surreal) day looking after Star Wars characters at Legoland Windsor and this weekend I will be stewarding at the Royal Windsor Horse show and Jubilee Pageant. Two very different roles, but both rewarding in their own way. It feels wonderful to be giving something back and to be using my skills for the benefit of others. Many of you already do amazing things for NRAS, whether it be helping our fundraising team, being part of our telephone support network, distributing information to surgeries/hospitals, coordinating our groups meetings or just simply helping us spreading the word! Helping NRAS, helps you! If you are not already involved and would like to volunteer, in however small a way, contact our volunteer network on 0845 458 3969 or visit our website for more information.

Make 2012 your ‘year to volunteer’!

Happy Friday to you all!

Emma
Membership Supervisor

Where have all the rheumatology consultants been this week? by Sarah Kate Ball

noreply@blogger.com (NRAS) — Fri, 04 May 2012 14:19:00 +0000

It’s been unusually quiet here in the NRAS office this week with a lot of staff members attending the British Society for Rheumatology (BSR) conference up in Glasgow. The BSR conference is an annual event and a very important few days in the world of rheumatology. The conference is an opportunity for rheumatology consultants, nurse specialists, GPs, researchers, podiatrists, physiotherapists, occupational therapists, academics and specialist charities like NRAS to get together and discuss all things musculoskeletal. This year there have been talks from some of the UK’s leading rheumatology professors, and seminars on subjects including ‘reproductive issues in rheumatology’, ‘sex discrimination in the autoimmune rheumatic diseases’, ‘optimising therapy for rheumatoid arthritis’, ‘the foot and ankle’, and ‘new developments in reducing work absence for people with musculoskeletal conditions’. There are various awards given to those working innovatively in the field of rheumatology, or to those who have made particularly outstanding contributions. There is also an opportunity for organisations like NRAS to exhibit research posters and make presentations about projects they have undertaken. This year we were proudly able to display one poster detailing an audit of our helpline services, another based on our ‘RA and Physiotherapy’ report, and to make presentations on our ‘Impact on the Family’ survey and our online work information.

It all sounds very interesting, and I am very much looking forward to hearing from those who attended about all the research findings, new developments and future areas of research mentioned. NRAS members will also have the opportunity to find out more about the topics and research discussed, and what we learned at the BSR this year, in the members’ magazine. You can see a sample of the articles featured in a recent NRAS magazine here: www.nras.org.uk/includes/do...

So, while it has been quiet, the skeleton staff left here in the office have been working very hard to keep everything ticking over! We have even found time to launch a new ‘foot health’ section of the NRAS website where you can find information on podiatry, foot hygiene and some personal case studies. Please click on the following link if you’d like to take a look: www.nras.org.uk/about_rheum...

I will shortly be needing advice on where to find some good sturdy trainers having signed myself up, along with 4 other NRASers to run the NRAS 10k in the summer. And as if running up hills and getting very sweaty on a Sunday morning wasn’t fun enough, we will also be dressed up as 70’s disco giants ‘The Village People’. So I now have the added challenge of finding some sweat-proof facepaint with which to daub a realistic looking goatee on my chin...wish me luck!

I think we are now all looking forward to our long weekend, I hope you are all able to enjoy a happy May Day bank holiday.

Sarah Kate

NRAS Helpline

AHOY There Mateys! by Maimie Hume

noreply@blogger.com (NRAS) — Fri, 27 Apr 2012 10:06:00 +0000

I am delighted to tell you that I have been rescued!

Along with four lovely seafaring colleagues in a wee boat, our merry team, The Jilly Rogers – so named after our illustrious Cap’n Jilly, - survived afloat and without starving or falling out – literally as well as metaphorically!

Just what is going on you ask, is nautical NRAS going overboard?

The boating theme is already well afloat with the gallant doctor Martin Lee circumnavigating this island alone amid blisters and courage. But the shipwreck rescue I refer to was part of our staff Awayday this past Tuesday.

Provided with a curious list of things deemed potentially useful, three NRAS manned and womanned boats did their utmost to keep their mariners fed, watered and alive – and of course hopefully rescued.

To my utter surprise, moments after I boldly declared that I would happily sink with my assembled shipmates, we were announced the winners! Happily no other boat sank either.

The fun exercise was a super use of teamwork and shared decision-making, not to mention creative problem solving and imaginative use of some very odd resources. It probably is no great surprise to you that these very qualities are regularly applied in our work at the NRAS office, where gangplanks are mercifully absent, and we enthusiastically keep the RA-awareness flag flying.

Our virtual sailing experience was part of a marvellous day’s intensive brainstorming, focusing on the development of NRAS, the factors that influence our current work alongside plans and ambitions for the future.

Ably commanded by Admiral Ailsa we look forward to steering through both smooth and choppy waters together and, as we do, we count on your continued involvement, support and willingness to share oars and lifebuoys with us!

Should I disclose the names of my inspired sea dogs? Perhaps not, everyone should have a secret that will go with them to the fishes - Especially on a Friday!!

Maimie Hume
Volunteer Network and Project Supervisor

Challenging Times!!!

noreply@blogger.com (NRAS) — Fri, 13 Apr 2012 15:55:00 +0000

Hi everyone

Hello from the helpline team, although I am considering joining my fundraising colleagues as they seem to get all the exciting jobs! I refer of course to all the fantastic events and challenges that our Members and Supporters are involved in and in particular the incredible efforts of Martin Lee which Ruth described in our last NRAS blog. For those of you who have not read about this before, Martin, a UK rheumatologist, is kayaking ‘Round the Isles for Rheumatoid’ . This involves a 2,600 mile clockwise solo circumnavigation of the UK mainland and is equivalent to 100 marathons in 100 days – I am exhausted even thinking about it and completely in awe of what he is doing, particularly when you look at the map and realise just how far it is. Martin has undertaken this challenge as his aunt has lived with RA for many years and is someone who inspired him to start studying medicine. If you would like to find out more about Martin and perhaps donate towards his fundraising target of £100,000 then please click on this link:-

www.nras.org.uk/kayak4RA

I am equally in awe when I hear or read about the army of supporters who are doing wonderful things to help support NRAS and its work and certainly without their efforts we would not be able to help the 1000’s of people who ask for our help every year or who request our information.

You will probably have seen all the coverage on the news about changes that were proposed in the budget in regard to making charitable donations and the potential effect that this will have on charities especially at a time when, due to the economic climate, funding is already a major issue. We are therefore more reliant and hugely grateful to everyone who supports us and why I would urge you to get involved with us in whatever way you can! As for myself, I am currently looking for my own challenge and think it may be a sponsored slim as my son is getting married in September so watch this space!

If you have a question or just want to talk through things then why don’t you give the helpline a call? The helpline can also provide you with a wide range of information and publications and make suggestions as to other good sources of help. The helpline is open from 9.30 to 4.30 Monday to Friday or email us on helpline@nras.org.uk .

We are pleased to be able to tell you that in early May we are launching a new area on the website which looks at feet, an area of the body that, I know, causes many of you with RA many problems and a topic on which we felt we needed much more detailed information. We’d love to hear your comments or receive your suggestions about this new addition to our information resources.

Best wishes

Lorraine

No rest for the wicked!

noreply@blogger.com (NRAS) — Thu, 05 Apr 2012 16:44:00 +0000

Hi Everyone!

My last blog was in fact my first and now I have already been here six months. Time does actually fly when you’re having fun!

As usual we’ve been rather busy in Fundraising, the last few weeks have been building up to this past weekend and I was excited/fearful of what was to come. That’s because Saturday was the Olympic Park Run, a five mile event around the Olympic Park which finished in the stadium. Oli Hoare (my fundraising colleague), Darren Smith (long time fundraiser) and Chris Deighton (NRAS medical advisor) also won places in the run which meant NRAS had a bit of a gang on the day!

We were all wearing t-shirts that quoted ‘We were the first to cross the Olympic finish line’. The past tense used in this quote worried me when I received my pack in the post. As mentioned previously I’m not exactly known for being athletic and have never really enjoyed sport, so crossing that finish line was not going to be easy for me! The nerves went away as I started running; I put my music on and set off. Oli disappeared very quickly into the distance as he is training for the Brighton Marathon on 15th April (Good luck Oli!). The Olympic Park was nice but if I’m honest I had a bit of a memory blank about it. It seemed to go on forever but my epic playlist was spurring me on. When I got to the stadium I was so relieved and as I came in I saw the NRAS team cheering me on from the stands! I later regretted the joke sprinting that I displayed for my fans at this point, as I couldn’t walk very well for a while after. Crossing the finish line was one of my biggest personal achievements and I know it won’t be my last fundraising challenge! So far Oli and I have raised over £500 which is a great feeling. Darren and Chris were both super speedy and have also raised a lot for NRAS. You can find all of our donation pages at www.nras.org.uk/fundraisers...

The Fundraising team were not finished there. Oh no! On Sunday morning we all met at The Ahoy Centre in Deptford to see off the craziest/most amazing consultant rheumatologist in the world, Dr Martin Lee, as he embarked on his incredible challenge, ‘Round the Isles for Rheumatoid’.
Martin has prepared for this journey for a long time, hoping to raise awareness of rheumatoid arthritis and £100,000 for NRAS by kayaking 2,600 miles around the UK mainland. His inspiration is his Aunty Maureen who has lived with RA for many years. The trip will take around 4 months to complete – ouch!

We waved Martin off (he is extremely quick so this didn’t take long) and have been tracking his progress ever since. Have a look at the map on our website www.nras.org.uk/kayak4RA where you can follow Martin via a tracking device while he is kayaking. He’s done really well so far but the weather is prevented him from carrying on today. You can find out more about the challenge at www.martinkayaking.co.uk and keep tabs on his journey via www.facebook.com/martinkaya... and www.twitter.com/martin_kaya... If you wish to sponsor Martin please go to www.virginmoneygiving.com/m...

As such a supportive bunch I hope you will all do what you can to publicise this challenge and together we might make headlines! Hopefully Martin’s efforts will shine a light on RA and help people understand it better. Fingers crossed!

Wishing you all a lovely Easter whatever you are doing!

Ruth

Online & Social Media Coordinator

What a busy weekend!

noreply@blogger.com (NRAS) — Fri, 30 Mar 2012 16:44:00 +0000

This weekend is a very exciting weekend for Fundraising. On Saturday Oli and Ruth (from Fundraising) will be taking part in the National Lottery Olympic Park 5 mile run which is taking place at the Olympic Stadium. I had hoped to get a place but sadly was unsuccessful. We have a team of 4 running for NRAS, along with Oli and Ruth Dr Chris Deighton, NRAS Medical Advisor, and Darren Smith, long standing supporter of NRAS, will all take to the roads in the stadium along with 4996 other runners all hoping to complete the 5 miles.

This is the first time the Olympic stadium has been opened to the public and I am lucky enough to be going along with Tracey to cheer our team on. If you would like to sponsor any of the team please visit www.nras.org.uk/fundraisers... . We will keep you up to date with photos on our Facebook site at Facebook.com/nationalrheumatoidarthritissociety.

On Sunday Dr Martin Lee will be setting off from the Ahoy Centre in London to begin his epic 4 month challenge of a solo kayak around the UK in aid of NRAS. This has been a long time in planning and is now finally here. Martin has worked extremely hard to ensure that he gets to see as many of our NRAS Volunteers as possible as he makes scheduled stops around the country. If you are in the London area on Sunday come along and see Martin off at 10.00 am.

If you would like to see his route his schedule is available on our website at www.nras.org.uk/kayak4RA. If you have the time please go along and meet Martin on one of his stops, at times he will be craving company more than anything, along with cake and tea too! We have a map on our website tracking Martin’s progress so do take a look and see how he is doing with his challenge. If you would like to sponsor Martin please visit www.virginmoneygiving.com/m... . If you have any contacts with local media please do let them know about Martin’s challenge and help him to raise much needed awareness of RA and what a misunderstood disease it is.

In amongst all this I have a very good friend’s son’s 21st birthday party on Saturday evening where I will be ‘performing’ a song for the birthday boy! Performing is probably too strong a word as it is in fact 5 mums, who can’t really sing but wish they could, singing a Take That song having made up their own words!

Our running programme is going well, we now have only a few remaining places for the Great North Run so do hurry if you would like to run for NRAS. All our races can be found on our website at www.nras.org.uk/runs . Don’t forget to register for our very own 10k run on the 8th July.

As always we would love to hear from you if you are planning to do some fundraising for NRAS so please do get in touch on 01628 501547 or val@nras.org.uk.

Have a great weekend.

Val

Sam’s farewell........

noreply@blogger.com (NRAS) — Fri, 16 Mar 2012 16:49:00 +0000

I am very sad to say that this will be my last blog as I am leaving NRAS at the end of March.

Although I have only been here 6 months, I have learned a tremendous amount not only educationally but how a charity as a whole, works.

I have been very fortunate to work with the wonderful fundraising department and the incredibly dedicated Helpline team. The amount of work that goes into each fundraising event and each helpline telephone call is eye opening to say the least.

I have also seen the amount of work involved in the ongoing research and the campaigning into the awareness this awful disease.

On a lighter note (or not!), one thing I won’t miss is the constant temptation of goodies laid out for everyone to dive into. This has been blogged about before and believe me, it is all true right down to the ever growing waistline! I am tucking into a piece of lemon cake as we speak but only to give me inspiration for my very rusty writing skills! I am moving on to a company in the centre of Windsor which means I will be able to walk to and from work and looking forward to seeing the tyres disappear from my middle!

I will miss talking to our members, some of whom I have got to know quite well now but most of all, I will miss everyone here at NRAS as each and every one of them is amazing but I am hoping we will meet up again very soon for a knees up here and there and of course I will be keeping tabs on them on Facebook and see what they are getting up to.

I wish NRAS and its wonderful members all the very best for the future and thank you for a fabulous time here.

Sam Beaton

NRAS Administrator

Ailsa's Blog - Patient Programme – 'Excellence in Rheumatology Conference , Madrid'

noreply@blogger.com (NRAS) — Fri, 09 Mar 2012 14:04:00 +0000

[Pictured L-R: Gillian Coward (Northern Ireland), Jean Bailey-Dering (Wales), Ailsa Bosworth, Margaret Fisken (Scotland), John Rowland (UK)]

At EULAR (major international rheumatology conference held annually in European cities) which was held in London last year, Prof. G.D. Kitas, Consultant Rheumatologist, Director of Research & Development, Clinical Director, Ambulatory Care, Dudley Group of Hospitals, UK and Prof. Piet Van Riel, Head of the Department of Rheumatology, University Medical Centre Nijmegen, THE NETHERLANDS, approached myself, a representative of the Dutch patient organisation, and representatives from LUPUS UK and LUPUS Europe, with an idea to develop a patient programme to run in parallel with the Excellence in Rheumatology conference taking place in Madrid in January, 2012.

The idea was for us to develop a two-day patient programme on RA and LUPUS for 50 patients (25 RA and 25 LUPUS). We thought this was an excellent idea but made it clear to George and Piet that patients would only be able to attend if bursaries could be made available to cover their travel and hotel costs. It was confirmed very quickly that they had been successful in obtaining the necessary bursaries which we were all delighted about. We then spent the next 6 months determining the patient eligibility criteria, what the programme would comprise, the speakers and chairs and the logistics. We were all excited to be able to design a patient programme from start to finish and had many teleconferences discussing ideas during the last half of 2011. The language of all international medical conferences is English and so the UK is fortunate in this respect - so the first criterion was that all applicants should be able to converse in English. We also wanted to attract people who had not been to an international conference before if at all possible and who could also disseminate what they had learnt to as wide an audience as possible on return to their own country, through local patient groups, local rheumatology teams, their national organisations and the media.

We had 25 people with RA from 9 European countries, the UK, Netherlands, Spain, Poland, Romania, Hungary, Greece, Estonia and Belgium. Due to the requirement to be able to disseminate the information widely on return, we invited applications from NRAS Group Co-ordinators from across the UK so that they would be able to present information at local group meetings on return, contribute articles for our website and magazine and also talk to their local rheumatology teams about any specific areas of concern or interest. We had a total of 16 applications from the UK (more than any other country had!) and to ensure full coverage of all UK countries, divided them into England, Scotland, Wales and Northern Ireland. We offered one place to Arthritis Care and they put forward a candidate from Northern Ireland, so after pulling names out of the other three hats, we ended up with one representative each for England, Wales and Scotland.

All sessions were lively and interactive and everyone really participated well. An article together with comments from our UK participants and photos of the event will be published in our Members’ magazine out in April. I did a DVD interview with Prof. Ian Bruce (Manchester) raising issues which the day two workshops raised – if you are interested to watch it, here’s the link: http://www.youtube.com/watch?v=x-ya3oMRJK8&context=C4fef0e1ADvjVQa1PpcFN9P7bsDC3BtKJ9Pdg6uaTpSQJA_-hI02c=

The following comments are typical of many received from the participants:

· Meeting has been stimulating and informative. Very good for networking both amongst UK group and with others. A learning experience in many ways. Many thanks. (Jean Bailey-Dering, Patient Bursary recipient, UK)

· A marvelous event. I especially enjoyed meeting patients from all over Europe…All presentations were of high quality and stimulated me to make more changes in my behavior. (Gillian Coward, Patient Bursary recipient, UK)

All in all, it was a very successful event and we hope that the organizers of EiR will consider running this again, perhaps for different disease groups, such as Ankylosing Spondilitis, Psoriatic Arthritis, Scleroderma, etc. and with different host countries organizing the programme so that other people get this great opportunity to share experiences and learn from each other.

Ailsa

Clare’s cheeky Charleston brings in the cash! by Clare Jacklin

noreply@blogger.com (NRAS) — Fri, 02 Mar 2012 17:12:00 +0000

Would you believe it? Me? Dancing? For NRAS? I was given the opportunity to take part in a Strictly Come and Dance charity competition in Maidenhead that was staged last Saturday (Feb 25th)
Six novices were partnered with 6 dance teachers to learn a dance in under 9 hours over 3 weeks. I missed the first week of rehearsals as I was in pantomime, oh yes I was! So from the offset my dance partner, Dave and I, were playing catch-up. We managed to squeeze in an extra couple of evening rehearsals in an empty office upstairs in our office block much to my colleagues’ amusement though they were banned from taking a sneaky preview. We were definitely going for the comic value with a very cheeky Charleston (video footage may appear on the NRAS facebook page soon so keep an eye out for it. Dave’s nominated charity was the National Eczema Society and of course mine was NRAS.
Well Saturday night came around far too quickly and even though I am no stranger to speaking or acting in front of an audience, dancing with just one other person is completely out of my comfort zone ... I was a quivering wreck. 260 people packed the theatre and I was overwhelmed when I saw Ailsa and the rest of the NRAS crew in the audience waving banners with “Clare to win” in big letters!
I am very glad to say that even though the actual performance went by me in a blur I did not disgrace myself and in fact got a tumultuous applause with some people even getting to their feet! (but not to leave in disgust!)
Dave and I won the “DANCE WITH LIFE” award that came with £100 prize money for our charities!
As well as strutting my funky stuff I have been busy working with my colleagues in this first part of the year, planning 2 group launches in spring, one in Salford and one in Leeds (full information on the website everyone is welcome to attend). I’ve also been to Swansea to visit a group; Bath to visit the rheumatology team at the “Royal Mins”; been interviewing people for the post of membership manager; sitting on the steering committee for the next IMID summit meeting in London in September; visited a Greek Cypriot Women’s Group in north London as well as the Union of Catholic Mothers’ meeting at my church; finished a Leadership course and popped down to Eastbourne as a guest speaker for an RA group. Phew! Bring on the next 10 months. We’re off to a flying start.

Clare

Writer's Block

noreply@blogger.com (NRAS) — Fri, 24 Feb 2012 11:53:00 +0000

Sitting here looking at a blank sheet of paper I had the feeling of what writers block might be like, but I’m no author. Perhaps an artist has the same feelings when they’re not sure what they feel like painting but, although I enjoy art, I am no artist. So where does that leave me with chatting to you on my blog? Sitting in front of a piece of paper with only a few words on it, that’s where!
I haven’t done drawing for quite a while but if I can manage to load an image on here I’ll show you the sort of thing I enjoy doing. I can’t think of anything better than having enough spare time to lose myself in a drawing while a relaxing Mozart Piano concerto is playing in the background. Perhaps I should pick my pencils up again as I haven’t done any for months. At least then I could make use of the lovely pencil grips the office secret santa gave me.
Speaking of secret santa, December and January were extremely busy months for me in the office but this month I have been able to pick up the projects I had started planning some time ago. I always enjoy getting my teeth stuck into something new and pleased I’ve had a bit of time to dedicate to it. Things will soon change though as the Volunteer Network has quite a lot coming up in the next few months.
We also have two launch meetings in March. They’re not too far apart so at least that cuts down on travelling time for us. On the 13th we’re in Salford and the 14th we’ll be in Leeds. They’re a lot of work but it’s rewarding for us to be able to help more new people.
As we draw to the close of February I feel a sense of optimism. Just round the corner we’ll have lighter mornings and evenings, a burst of spring flowers with a promise for a bright and sunny summer, more holidays and renewed hope for something better being almost here.
Before that though, as I’m writing this a couple of days early, we have pancakes. I’m going to have mine the traditional way, with lemon as that will count as one of my ‘five a day’.
p.s. they were so delicious I had them again on Wednesday!
Sue

Why did I move to the top of a hill?

noreply@blogger.com (NRAS) — Fri, 17 Feb 2012 17:31:00 +0000

In less than 2 weeks, I will have been with NRAS a full year and what a year it has been; I have moved house, twice; I had my first Christmas away from home; I brought a modern car with power steering and other modern gadgets (not like me); and ventured further North than I have ever been in the UK. Quite some milestones, but nothing as scary or as daunting than signing up for the Brighton Marathon on the 15^th April!

Marathon, oh dear, that’s going to be tough. Well training, it’s been going ok, I’ve hit 1/5 of the distance, not bad you may think, but hang on; it’s in less than 2 months away!! Somehow I managed to rope my Dad, 2 of his employees and my friend into running too, excellent I won’t be alone, at the back of the grid. Hopefully you will have guessed that I am doing this in aid of NRAS, if you would like to sponsor us and help us stay motivated then please go to http://www.justgiving.com/rowledge4rheumatoid. Thank you.

So the hill, well I moved house last Saturday and I thought, let’s celebrate with a run and some training. Downhill was fine and easy, excellent I thought, I’ve made the right choice, until I was heading back home and I came across that hill, my last piece of track to get me to my door. All I can say, is it is pretty much near vertical. What have I done?

Please show me your support with a comment below or if you can, a donation to the above link. All of your thoughts and best wishes will spur me on to sprint the last 0.2 miles of the 26.2miles!!

If you want to keep up-to-date with my progress I am now on twitter you can follow me here: https://twitter.com/#!/Oliver_NRAS

Thank you,

Oliver

Trust and Grants Fundraiser

NRAS

2012 here we come!

noreply@blogger.com (NRAS) — Fri, 10 Feb 2012 15:45:00 +0000

Unbelievably we are already halfway through February and where did January go?! I think it’s a sign of getting older when the time passes faster so am feeling very old at the moment!

The good news is that January seems to have whizzed past because so much has been happening. And everyone is obviously feeling that New Year compulsion to get fit as we’ve already got 15 people signed up for the Great North Run in September (how organised is that?!) and our star runner, Darren Smith, has signed up for the Great North Run, Royal Parks Half Marathon and the Great South Run. Obviously 2 half marathons weren’t enough for him last year so he is taking on the third. Oli, who works in Fundraising, is busy training for his first marathon in Brighton in April and he and Ruth have been lucky to secure places in the Olympic Park Run on the 31^st March as a warm up. They would love to have your support so if you can sponsor them please do at www.justgiving.com/rowledge4rheumatoid or http://www.justgiving.com/NRASolympicparkrun.. We will be there to cheer them on and revive them at the finish line!

Martin Lee, a young rheumatology consultant, came to visit us at the end of January as he is setting off on 1^st April from Greenwich to undertake a solo circumnavigation of the UK in his kayak to raise funds for us. He has a fantastically well thought out timetable for his 3 month journey and we hope that lots of our supporters, volunteers and members will be able to meet up with him on the way round. Anyone who wants to know more or would like to get involved can contact val@nras.org.uk or visit his website at www.martinkayaking.co.uk. I am in complete awe of the challenge he has set himself, especially as on his return he immediately starts a new job at the Freeman Hospital in Newcastle.

Here in the office we’ve been a bit more sedentary and baked and eaten lots of cake to launch Tea for 12. Our tea parties were a great success last year so we have decided to do this again so I hope that you will all get baking and invite your friends, family, neighbours, work colleagues, or just some nice people you come across to a tea party and raise some funds for NRAS at the same time. I think all of us here should donate the same amount in money as we gain in inches on our waistlines from all the cake we have eaten!

My main task for the start of this year is to look at our membership and really find out what you would all like from being a Member of NRAS, and for those of you who aren’t Members, what would entice you to join us. If you have any thoughts or suggestions I would love to hear from you so please do email me at tracey@nras.org.uk or leave me a message after reading this and I will take your comments on board and put them into the thought pot. We are here for you but need your help for us to help you so do get involved and be part of the NRAS family.

I hope you all have a snow free weekend. Keep warm.

Tracey

Director of Development

Brace yourselves. Party conference season is almost upon us.

noreply@blogger.com (NRAS) — Fri, 03 Feb 2012 17:25:00 +0000

It’s the beginning of February. It’s Friday. It’s cold. And I am coming down with a sniffle. I should be thinking about the weekend and a trip I have planned to Bristol, but instead my eyes are trained firmly on a heap of forms with such uninviting titles as ‘Conference Observer’ and ‘Executive Observer Status’, and row after row of dotted lines and empty boxes beckoning to be filled in. Ah, the delights of party conference...

Those of you uninitiated in the ways of party conference may have the misguided impression that this happens once a year, confined between the months of September to October, when the Westminster circus decamps from the spender of its Gothic Revival palace by the Thames and unceremoniously plonks its self at the seaside (Brighton or Bournemouth being the particular favourites) or in the middle of one of those shining beacons of urban regeneration, Birmingham, Liverpool or Manchester.

In reality this is ‘conference lite’ - or to use a running analogy - the equivalent of running ten kilometres (or a one mile fun run if you manage to attend just one of them). To be a true campaigner you have to do a lot more - and I really do mean a lot more.

So for those who want to know, here is the gruelling schedule of what the real conference season looks like (‘conference max’ as I like to call it), starting in two-weeks time:

• Welsh Labour conference, 17-19 February, Cardiff
• Welsh Lib Dem conference, 02-04 March, Cardiff
• Scottish Labour conference, 02-04 March, Dundee
• Scottish Lib Dem conference, 02-04 March, Inverness
• SNP conference, 10-11 March, SECC, Glasgow
• Plaid Cymru conference, 23-24 March, Trimsaran
• Scottish Conservative conference, 23-24 March, Troon
• Liberal Democrat annual conference, 22-26 September, Brighton (during my birthday!)
• Labour Party annual conference, 30 September – 04 October, Manchester
• Conservative Party annual conference, 7-10 October, Birmingham

Yes, that’s right. Never to be one to shirk my duties, over the next 9 months, I will be visiting every one of these conferences.

In the name of NRAS, I will be walking, driving and flying to confront politicians about the state of RA services, cajoling them, and trying to enlist their support. And all the while I will be contending with endless amounts of tepid brown food, stale coffee and the occasional sip of vinegar scented wine. Oh joy!

Spending so much time on the road could be a bit lonely (cue the solemn violin music...), but thankfully I won’t be alone, because of the amazing support being shown by our members around the country.

In Scotland, for example, we have a burgeoning network of volunteers who have offered to volunteer to attend the party conferences, and plans are now in place to bring along two members with me to each of the Scottish party conference to fly the flag for RA.

And, not to be outdone, two of our Welsh volunteers have agreed to come along to the Welsh conferences with me to share their stories about their experiences of living with RA and campaign for changes to local RA services.

In England, too, we have had lots of members express interest in getting involved in lobbying politicians, and we are now thinking about how we can involve them directly during the autumn season.

So, buoyed by this support, I’m actually feeling quite chipper. Let’s just hope the weather warms up a bit, eh.

Jamie’s party conference ‘marathon’ season starts on 17 February. Look out for more news, political gossip and traveller’s tails on the NRAS blog, as Jamie makes his way across the UK.

Jamie Hewitt
Government Affairs Manager

Tea and Empathy

noreply@blogger.com (NRAS) — Fri, 27 Jan 2012 10:23:00 +0000

All through my life, tea has been a constant. We Irish love our tea and that’s for sure. The United Kingdom Tea Council confirms the Republic of Ireland is the largest per capita tea drinking nation. It is consumed on high days and holidays, at happy times and for comfort in sad times. A cup of tea starts a task, progresses a task and finishes a task. As I sit here with my laptop, there is a cup of tea within my reach to help me along my way.

So, with a background steeped in tea, it seems strange that I should be one month short of my fiftieth birthday before I came face to face with that wonderful accoutrement - the tea urn. It was on 22nd September 2010 and in Westacott Business Park of all places. I walked into the NRAS office as a volunteer and Clare greeted me in that most comforting way, ‘first things first, would you like a cup of tea?’

It was from that moment also, that I began to gain some real understanding of Rheumatoid Arthritis and the impact it has on people’s lives. I learned it strikes both young and old, for no obvious reason, and that sadly, there is no cure. As time progressed, I appreciated and admired the vital work done by each and every member of the NRAS team. Whilst helping out in Volunteer Network, I became aware of the numerous group meetings up and down the United Kingdom, where people affected by RA met to support each other and spread the word about the help available at NRAS and beyond.

Rheumatoid Arthritis is a viciously debilitating disease but my goodness, from what I have seen, it is borne with much fortitude and courage. The NRAS team, led by the inspirational Ailsa, works tirelessly to improve the life of Rheumatoid Arthritis sufferers and their families and I feel honoured to have been involved in some small way during the past eighteen months.

My own personal journey requires me now to stay closer to home and family and I leave the Membership Department on 31st January. But I will think of you often; my colleagues in the NRAS team and the wonderful members and their families.

And please……keep that tea urn switched on. I would love to pop in for a cuppa and a spot of voluntary work from time to time. Thank you all for having me – it has been a pleasure to know and work with you!

Now then, surely it’s time for a cup of tea?

Mary x
Membership Supervisor

Fun and a little bit too much running.... Sarah Drew

noreply@blogger.com (NRAS) — Fri, 20 Jan 2012 12:32:00 +0000

I began working as a data analyst intern for NRAS. My role is to evaluate the services at the charity to ensure that they are having the best possible impact on the people who use them. As a result I’ve been conducting focus groups, telephone interviews and if you’ve been sent any questionnaires it’s probably a fair guess that I’m not far away!

As a result I’ve been spoilt by the number of opportunities I’ve had to meet people with rheumatoid arthritis and their families. I’m always surprised by how welcoming everyone is and how willing they are to give up their time to help. As well as being insightful it’s also been a lot of fun – we’ve shared more than a few mince pies and giggles together. A particular highlight was trying out the holistic therapy technique of ‘cupping’ on the lucky lady who happened to be sat near me at a regional group meeting. I’ve pleased to say she emerged unscathed!

The remainder of this year looks no less exciting both for me and for NRAS. Against my better judgement I’ve already been coaxed into running the NRAS 10km with a number of my colleagues for the 2012 NRAS Games. I’m also very concerned that it’s only a matter of time before I’m persuaded to jump out of a plane attached to an instructor and parachute. All in the name of charity... I’m looking forward to meeting even more of you in 2012 and wish you all the best.

Sarah Drew

Data Analyst and Research Intern

Sam's News......

noreply@blogger.com (NRAS) — Fri, 06 Jan 2012 17:30:00 +0000

I started working for NRAS at the end of August and my initiation ceremony was to be taken to Swindon to see off some Men in Tights (literally). Well, what an initiation ceremony that was! I couldn’t have asked for a better one than to see a group of very fit men in Lycra touring around the West on their bicycles! It was a great insight to fundraising and to see how dedicated people can be. Was a fun morning!

Having recovered from that, I settled into my new role as Executive Administrator which I am thoroughly enjoying. My role is varied in that I help out with the fab and fun fundraising team and I also have the opportunity of talking to members, new members, volunteers, and also newly diagnosed patients. It is especially rewarding to help direct newly diagnosed patients to our invaluable Helpline and to hear how much better they feel after having done so.

Since working at NRAS, I am shocked as to how many people I now know who have this disease but it is, again, rewarding to be able to tell them about NRAS and the help they are able to receive and some of the knowledge I have gleaned so far. I learn something new every day and I am looking forward to learning a lot more.

We have an exciting year ahead of us as the NRAS Games has arrived! Please make a joint effort for NRAS in 2012 by taking part in the NRAS Games to celebrate this special year in sport. Whether it be running, cycling, swimming, walking or organising/taking part in a team event such as an office games or fun sports day, holding a Tea for 12 party or taking part in our online quiz, any effort to help raise awareness and funds is really important to us. I look forward to hearing from you!

Sam Beaton

Diaries, Cakes and a Worn Out Keyboard! by Deborah Flitter

noreply@blogger.com (NRAS) — Fri, 23 Dec 2011 12:29:00 +0000

As we approach the end of 2011 and as the latest member of staff to join NRAS as Ailsa’s PA, it is my great pleasure to be able to close the year in this way.

What a year it’s been...and I’ve only been part of the team since October!

First I thought “they eat a lot of cake here”...well we do eat a fair amount but it actually turns out that a there were quite a few October birthdays so the cake consumption did drop off fairly quickly when November arrived.

Luckily the excesses of cake didn’t have an impact on my waistline and it was with relief that I managed to climb into my “I’m going somewhere important” suit in order to attend the very prestigious Healthcare Champions event at The Speakers Rooms at The House of Commons, and as I had only been working with the team for two weeks when this took place, I was beginning to get the feeling I must be part of something very special.

There wasn’t much opportunity to get to know Ailsa in those first two weeks, as the emphasis was on final preparations for the HC event and I was very much involved. I learned during that time how NRAS will go the extra mile to ensure its members and associated health professionals feel valued, and how this attitude is common to every aspect of the charity, no wonder NRAS staff need cake, because quite honestly they don’t stop for anything else!

With the success of the HC event firmly behind us the time had come to concentrate on working out why the letters on Ailsa’s keyboard had faded, and why every time the words ‘Ailsa’s diary’ were mentioned, certain members of the team shared knowing looks and slowly backed off shaking their heads in amusement....oh and if I was EVER going to be able to actually SEE Ailsa behind a groaning pile of papers which sat ominously between us....something told me this was not going to be simple!

Now I know you’re wanting me to say that in the last few weeks I’ve sorted the piles into beautiful files, kidnapped the (very full) diary and painted the letters back on the keyboard...! Between you and me this is no easy task due to the amount of work Ailsa takes on behalf of NRAS, the amount of hours she puts in tirelessly representing its members, the amount of reading she has to do and the amount of information she keeps inside her head that seems to spill out through her fingers as she frantically types reams of communication on that keyboard.

I’m not sure that I will ever manage to reign in Ailsa and neither would I want to because without her tireless passion for NRAS it wouldn’t be where it is today, but I think I am making a difference and I’m so looking forward to the challenge of working with her and the rest of the NRAS team in 2012.

On behalf of Ailsa and the team I hope you all have a wonderful Christmas and wish you much luck in the coming year....oh and more cake!...but for now I’m off to have one of Ailsa’s gorgeous mince pies...and yes, she even finds the time to make those herself!

Deborah

Farewell Blog

noreply@blogger.com (NRAS) — Thu, 15 Dec 2011 17:34:00 +0000

Hello All

I’m sad to say this will be my farewell blog for NRAS as I’m leaving this Friday (16^th December) to pursue a career in IT.

The past 2 years have been amazing and not only have I’ve learnt so much from my colleagues & talking to various people who work with NRAS but I’ve also developed as an individual and for that, I’m grateful to NRAS.

The commitment and dedication I see from members to health professionals and even my own colleagues is overwhelming. NRAS wouldn’t be what it is today without all this, so well done to each and everyone of you.

I have attended various events over the 2 years & I was delighted and honoured to be part of the 10^th Birthday Celebration Lunch held in Warwick, in the summer. I spent my time clicking away on the camera, but nevertheless enjoyed it! I’ve also shot the NRAS 10k run, the NRAS bowling evening amongst others and most recently & my final event, the NRAS Christmas Concert. We were joined by the RT Hon Theresa May MP & the Mayor of Windsor & Maidenhead, Cllr Asghar Majeed with local schools performing including our very own ‘NRAS Ronnettes!’. I am delighted to say we raised £600 from the evening and received positive feedback!

I have no doubt NRAS will go from strength to strength & I will actually still continue to work at NRAS on a voluntary basis, working hard to maintain NRAS’ relationship with a local restaurant, Asian Fusion. I will also be offering my help at events and to keep tabs (& maybe have some cake!).

I’m starting to get all teary-eyed & it’s only Wednesday at the time of writing this! So I will leave you all with a few final words. I will leave with fond memories of NRAS from the picnic to the football banter & lots of cake eating to attending the Co-ordinators conference & meeting some of you. I wish NRAS staff, members & supporters all the best for the future and thank you all, for your support.

I wish you all a very Merry Christmas & Happy New Year.

This isn’t goodbye, it’s au revoir!

Tameena

Seasonal eating

noreply@blogger.com (NRAS) — Mon, 05 Dec 2011 11:51:00 +0000

Hi everyone!

I just don’t know where the year has gone at the moment! I know that diet isn’t normally something that is associated with December, but I have noticed that it is a topic that comes up fairly often on HealthUnlocked, and on the off-chance that some of you, like me, are anticipating putting on a few pounds at Christmas I thought you might be interested in some pre-seasonal dieting information.

The word diet conjures up different things to different people. On the one hand, diet is about what you eat and how this can improve your overall health. On a more specific level, people talk about going on a diet because they want to lose weight. Of course, the best way of doing both is to change your eating habits so that you are eating a healthy, balanced diet. The weight loss may be slower than on some ‘fad’ diets, but it will be better for you, and may help you to keep the weight off.

The main advice on diet for people with RA is to have a healthy, balanced diet, the same as it would be for anyone in the general population, and of course keeping your weight at a reasonable level puts less strain on your joints. Exercise can help with weight loss, as well as having other benefits, like keeping your muscles strong. The level of exercise you are able to do will obviously vary, but here are some useful exercise links:

http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/lifestyle/exercise/exercise_rheumatoid_arthritis.aspx

http://www.arthritisresearchuk.org/Files/2282-Keep-moving-poster.pdf

You will often hear of ‘exclusion’ diets for people with RA, where you are advised to cut one thing or another out of your diet. You should always be careful when doing this that your diet is still balanced, and that you are not cutting out important vitamins and nutrients altogether. It is also very important to note that while some people’s RA does not seem to be affected by what they eat, for those that are affected, the foods that they need to cut out are very individual. It is not a case of: “All people with RA must cut out X,Y and Z” from their diet. For some it will be ‘X’, for some ‘Y’ and for some it might be ‘F’. So, what works for one person may not work for you. You could find out if any foods are irritating your condition by keeping a food diary for a while, where you monitor what you eat and how you feel each day. I also think the following information on diets might be helpful:

This is our general article about diet and RA:

http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/lifestyle/diet_alternative_therapies/diet_rheumatoid_arthritis.aspx

Here is a specific ‘festive’ article to help you over the Christmas period:

http://www.nras.org.uk/about_rheumatoid_arthritis/living_with_rheumatoid_arthritis/lifestyle/diet_alternative_therapies/seasonal_eating.aspx

Wishing you a happy advent period!

Victoria Backhurst

Helpline & Information Coordinator

Maimie's Blog - Festive Cookie Cutter of Great Britain

noreply@blogger.com (NRAS) — Fri, 25 Nov 2011 10:37:00 +0000

Interestingly, this cookie cutter is missing Northern Ireland and we are planning to add NI to our arsenal next year . This means I’ll need a new shape for December 2012’s gingerbread-making factory that my kitchen usually becomes (not always with gloriously successful results: always edible, not always beautiful).

The cutter’s shape is symbolic of my improving understanding of UK geography since joining NRAS in mid September. As Volunteer Network Supervisor I’m visiting many of you around the country both in established NRAS groups, recently formed group as well as to help encourage new ones. So far I’ve been to Salisbury, Poole, Oldham, Redditch, Tunbridge Wells and will shortly be heading to St Helen’s. All places that are entirely new to me so it’s exciting and also great to meet you face to face. I was told December’s pace would be a little slower however it’s not looking that way! My upcoming road trips will include Oldham again - to meet with the people who wish to make that group happen – as well as Brighton, Dorchester and Sidcup. I have no doubt that other places will materialize for visitations before this year ends up around the Christmas tree.

In a wild expression of optimism, I have set myself the task of getting Christmas gifts purchased before the end of November. I made the mistake of saying this out loud to my family who are observing my progress with quiet doubt. The idea seemed like a good one in October but as the end of the November looms it would be truthful to say that an element of frenzy is creeping in. Wish me luck, as I wish you too, along with some sanity in the shopping operation and may any gingerbread you encounter be both good looking as well as tasty!

Maimie Hume

My first 3 months back at NRAS

noreply@blogger.com (NRAS) — Fri, 11 Nov 2011 10:39:00 +0000

Hello there,

I’m Sarah Kate (which has caused lots of confusion in the office with two Sarah’s starting in the same week!) and some of you may remember me from a little while ago when I worked with Gail in the Membership team. Well, lots has happened since then, I have visited a total of 9 countries (I refer to it as travelling but some like to describe it as gallivanting!), hiked to Macchu Pichu, sampled lots of lovely wine in Argentina and visited the Rocky Mountains in Canada. But I have now been back at NRAS for 3 months, and it feels like I have never been away!

I am thoroughly enjoying my new role as Helpline Co-ordinator. It was a little daunting at first as we get asked such a wide variety of queries here on the helpline and I am continuing to learn new things every day. So please do bear with me if I feel the need to go and pick the brains of my more experienced colleagues in order to answer your questions to the best of my ability.

I have also had the opportunity to do my fair share of gallivanting (ahem I mean travelling) here at NRAS. In the short time I have been back I have been into London on various training courses, and to attend an educational day for rheumatology specialist nurses, up to Oldham to help host a very successful group launch meeting, and most recently up to the Houses of Parliament for the NRAS Healthcare Champions Award ceremony. This was a huge success and a very exciting night, in such spectacular surroundings. I have also had the great opportunity to spend a day at the Wexham Park Hospital rheumatology clinic, where I was fortunate enough to sit in on a number of consultations, watch a joint injection and grill the specialist nurses about all things RA related. It was a very valuable learning experience.

I am off into London again on Monday to attend the Annual Voluntary Sector Seminar at the British Pain Society, which should be a very interesting day. It’s a wonder I’m ever in the office long enough to take any helpline calls!

I hope you all have a lovely weekend.

Take care,

Sarah Kate

Ever expanding waistlines! by Clare Jacklin

noreply@blogger.com (NRAS) — Fri, 04 Nov 2011 17:37:00 +0000

Why might you ask would this be the title of my blog....well we have suddenly lots of new people in the office which always calls for cake and we also seem to have recently had a flurry of birthdays in the office which of course calls for cake and I seem to spend a great deal of time in my car which of course calls for Jaffa Cakes! Hence the ever expanding waistline!

Volunteer Network team up sticks and moved down the corridor to the other office to be nearer our colleagues in Helpline which is great but of course this meant being nearer the cake supply, which is not so good! We now have a new member of our team Maimie Hume who joined us on 13th September and has already been to Salisbury, Oldham and Redditch so we’ve definitely dropped her in at the deep end however I am very glad to say she is doing a fantastic job and has sunk beneath the waves of emails and paper I keep sending her way.

Since I last blogged, I’ve been promoted to Director of External Affairs (this is your opportunity to be impressed and say “OOOOH”) however this role brings with it a great deal more work and responsibilities (your opportunity to be sympathetic and say “AAHHH”). So Tracey (newly promoted Director of Development) seem to spend a great deal of time in meetings and flitting here there and everywhere representing NRAS which does enable us to shoulder some of the pressures from Ailsa and I must admit is challenging but rewarding.

This week has been yet another typical week with lots going on which I thought would be interesting for you to have a peek inside a “week in the life of NRAS”....
Monday- Scary realisation that the deadline for the winter NRAS magazine is looming; booked the NRAS Christmas meal; phew only 45 emails today to deal with; must read 30 page document outlining a project.
Tuesday- 7am start to drive to Redditch to visit rheumatology team at Alexandra Hospital; journey back in time for editorial meeting on the magazine before final preparations for Health Care Champions event in the Speakers State Apartments in the Palace of Westminster (other opportunity to say “OOOOH”) It was fantastic to celebrate the exemplary work of so many excellent health care individuals and teams from across the UK. Wonderful to have our patron Teresa May, Home Secretary and MP there to present the prizes.
Wednesday – More emails!! Group issues ironed out; teleconference regarding the next members’ survey then off to Stevenage for an evening patient meeting, phew back home before 11pm!
Thursday - 2 teleconferences before a meeting to discuss patient education plans
Friday – Thank Crunchie it’s Friday but how come my to do list is longer not shorter than it was on Monday – at least we managed to find organise some members to talk to the media on early diagnosis, some more to do media work on work issues and one to visit a pharmaceutical company in December to give the patient’s perspective at a meeting not to mention prepare to visit a Asian Community Health Seminar on Sunday...yes Sunday!
If anyone can invent something to give me more hours in a day I’d really be grateful! HA. Please be assured everyone here at NRAS is working flat out for you and for all living with RA and without your support we wouldn’t be able to do all we do so a big thank you to all our NRAS Members and if you’re not currently an NRAS Member please, please consider becoming one, as we NEED you just as much as YOU need NRAS. www.nras.org.uk/help_for_yo...

Clare

The first of the newbie bloggers

noreply@blogger.com (NRAS) — Fri, 28 Oct 2011 16:08:00 +0000

Hi All,

This is my first proper blog and although I am technically a newbie, I have been at NRAS a bit longer than some of the other newbies who I’m sure you will hear from in due course!

I’ve been with NRAS for two months already and how quickly it has flown by! I took over the role of Online & Social Media Coordinator at the end of August, very excited to be joining the team. Within a couple of weeks I was already cheering our runners on at the Great North Run with Val and Oli.
The weekend involved a mammoth journey in the slowest hire car in motoring history, ghost stories (and thereafter the fear of sleeping in the old halls at Newcastle University) and some rain, sun, rain and more sun on the day of the run. At the end of the day we were exhausted and hadn’t even taken part in the race. Well done again to all those who took part and good luck to those running in the Great South Run this Sunday!

Since then I’ve been busy with the website, database and building up our followers on Twitter and Facebook. We had our official 10th Birthday last Tuesday and all enjoyed some cake (that’s not much of a novelty here – cake mad I tell you).
The Christmas merchandise on the eBay shop has been flying off the virtual shelves so make sure you get your order in soon! We have Christmas cards, gift wrap and money wallets this year. You can visit the shop here: stores.ebay.co.uk/NRAS-Char...;_fsub=1&_sid=1045525980&_trksid=p4634.c0.m322.
Alternatively you can call Val on 01628 501547 or email at val@nras.org.uk to place your order or to request an order form.

To continue the Christmas theme (I know it’s early!), we are gearing up for the NRAS Christmas Concert on Friday 9th December. It will be held at All Saints Church, Maidenhead and tickets are £10 (£6 for Concessions). It looks to be a great night with two local schools performing and also a cheeky performance by NRAS’ well-reviewed Clare Jacklin (she is currently rehearsing to play the wicked witch in a production of Snow White). For tickets, please call 01628 501547 or email val@nras.org.uk.

So apart from the Christmas Concert, Fundraising is quietening down and after a meeting about next year’s events, plans are coming together. I can reveal that we will be embracing the Olympic theme with the aim to encourage all our NRAS supporters to do what exercise they can and raise money for NRAS...watch this space!

And as I’m on the subject of exercise, I should mention that I am famously a sportphobe...always the last to be picked for games at school and generally clumsy in any form of exercise. Yet today came the news that Oli and I have both won places to run in The National Lottery Olympic Park Run! I screamed with excitement and fear in equal measure as I read the confirmation email. Luckily the run is only 5 miles and at the end of March so I might survive! I think with my NRAS t-shirt on and a few jogs round the block beforehand I will leave behind the flashbacks of former school sport experiences - cross country running in the snow, being sent off in Netball for being disorientated (of all things) and even walking/fainting into a folded trampoline (I had a small injury and felt queasy..) only to regain consciousness with my skirt up and the whole P.E. class staring at the giant bruise on my head. Must.let.it.go.

So exciting things to come! Keep an eye out for our next year’s events and see what you can do to get involved. I look after Facebook and Twitter so if you have any news to share, email me at ruth@nras.org.uk.

Until next time!

Ruth
Online & Social Media Coordinator