Chief Executive's Blog

The London Marathon (and me)

I remember watching the London Marathon as a teenager and being totally in awe of the runners, vowing to myself, that one day I would take on the great challenge. Thirty-odd years later, with lots of 'life' in between, I'm finally taking on the challenge. So why now? Well,...


Invisible illness, invisible activity

There's a lot that goes on behind the scenes at NASS Sometimes some of the work we do takes weeks, months or even years to complete. Other times we can't share news and updates until a certain date. I attend a lot of meetings to influence the health landscape....


NICE Spondyloarthritis Guidelines

This week saw the publication of the NICE Spondyloarthritis Clinical Guideline. As far as I'm concerned that's a cause for celebration. Given that the delay to diagnosing ankylosing spondylitis is on average 8.5 years in the UK, NASS began its campaign to call for this Clinical Guideline back in 2012/13....


Bovril is the best medicine

In the last edition of AS News, our twice-yearly magazine for NASS Members and indeed on our Facebook page, we’ve talked about the benefits of having a pooch.  Many of you who’ve known me for a while will know that I lost my beloved Bisto, my 11 year old...


What does 2017 hold?

2016 was a great year for NASS. It was our 40th year, and packed with special events to mark that wonderful milestone.  I’m proud to say that NASS has been improving our service to you for a number of years now. Here are a few examples: We responded to...


The importance of pacing yourself - don't be like me!

Christmas is a busy time of year. There's so much extra to do, to fit in to our lives. I love this time of year and have a bad habit of taking on way too much. I know when I do too much, my body will let me know,...


The best job in the world?

A few weeks ago I was approached by our village church to see if I'd consider donating a Christmas tree to their Christmas Tree Festival this year. I said I would and so my family and I donated a tree and last Thursday it was time for me to...


Feeling sorry for myself, bad days and worrying

Many of you may remember I had surgery on my neck in March 2015. Although the recovery from this surgery was tough, by July I had placed my neuro-surgeon into the 'legend' category. My six years of neck pain, loss of grip, arm pain had disappeared; and I really...


Celebrating great care, calling for better care

On Wednesday 2 November 2016, over 120 supporters joined us in the Houses of Parliament. It's the first Parliamentary event we've held since 2014. Along with celebrating 40 years of NASS, we were also there to do some serious campaigning about AS. We contacted all MPs beforehand and over 20 came...


Inspirational People

Last weekend I ran my second ever half marathon (in my NASS vest obviously), but don't worry this isn't a blog about my running. It's a blog about some of the inspirational people I have come into contact with recently, and during the last few years. I'd already done...


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