Memories - Celebrating 50 Years!
Memories
As we mark our 50th anniversary, we’re looking back at the incredible community that has been the backbone of NASS since 1976. From the early days of advocacy to the breakthroughs of today, our history is built on your stories.
We’ve created this special Memories Gallery to celebrate the milestones, the friendships, and the progress we’ve made together. Take a walk down memory lane with us here and see the faces and moments that have shaped our first half-century.
Do you have a favourite NASS memory? We would love for you to share it as we look forward to the next 50 years. Contact sally@nass.co.uk
Brian Cowen
When I was 39 years of age, I loved my job, my family and my hobby of walking, climbing and travelling. Whilst on holiday I attracted another companion who remains with me to this day.
At first this entity was only occasionally intrusive. However, over time this companion became a real burden. Its presence began intruding on every aspect of life creating stress physically, mentally and emotionally.
A presence that affected relationships and friendships and had the ability to plunge one into despair. The struggle for many years was hampered by the fact that no one seemed to be able to ascertain who this companion was. Because of mobility issues a career came to an end, friends were unable to cope with the unpredictability, some days the black clouds of despair seemed overpowering.
Life became a progression through various medical services and constant changes in medication and operations that didn’t touch the problem. The life savers were a great team of physios and occupational therapists. Then one day a GP suggested a change in consultants. Without many expectations on my part, he identified my companion and named it as axial spondyloarthritis! So, with the support of a psychologist and new biologic medication, control of my nemesis began.
After twenty years of suffering, with new information I found a society that seemed to be talking about my companion. Their help group however was almost 50 miles away from where I lived. Impossible for me to meet with them. Then resources developed and I was able to discover a new family of people, who all shared similar experiences. My companion had also become theirs. Children, young mums, men and women of all ages and backgrounds. The pain was shared, the support for family to understand was discovered. Meeting up face to face on the Internet added a new dimension to life.
The Companion will never leave but is no longer in control. The support received from NASS changed more than my life. The light from each extra candle on the Birthday cake over the years has brought a little more brightness to life. Hillwalking and mountain climbing will never return, but the ability to engage in other fulfilling pursuits forty years on, has happened.
A massive thank you to all the team who have made the Birthday happen and have lit the candles on the cake year by year. For me at least NASS is more than a lifeline it is a family.
Never Alone Suffering in Solitude
Maria Ilia
I joined NASS in December 2024. It’s the place where I learned about axial SpA.
I appreciated the sense of camaraderie during challenging periods, the generosity of people like Garry who took the time to mentor and support me, and the valuable tools and tips in the webinars.
I feel the warmth, energy, and community that makes NASS so special.
Robin Lowe
I remember helping to set up a new branch of NASS in Southend-on-sea, Essex (about 1985 I think). Fergus Rogers was very supportive and guided us through the process. We held weekly exercise sessions and were supported by the local hospital.
Four of us had met at Southend General Hospital after being diagnosed with sacro-iliitis by the orthopaedic surgeon. We realised that we actually had AS and one of our number got referred to the Middx hospital where there was a rheumatologist. The other three of us followed and were taken under the care of the consultant there.
I moved away for work to the West Country and got a referral to the Bath Mineral Hospital and Dr Calin. A 2 week stay soon followed. We were run ragged by Jenny and Lou non-stop for the 2 weeks – Sundays included. All male patient group. Meds got under control, pain managed and felt so much relief emotionally from that first course. No AS group near enough for me to go to but education and periodic reviews at the Mineral saw me through.
Thank you NASS
The Royal National Hospital for Rheumatic Diseases in Bath (RNHRD) has a long tradition of providing excellent clinical care for axial SpA patients. RNHRD is now part of the Royal United Hospital (RUH) Bath, and continue to run a specialist two-week rehabilitation course for axial SpA.
Lewis Grey
I was lucky to work as a volunteer for NASS for a couple of years when it didn’t have an office and was run by a remarkable man called Fergus Rogers.
Fergus loved to talk. He, spoke eloquently and with great enthusiasm. His vocation in life was to promote AS as much as he could. He was so energetic all day.
He was a gentle man, kind and extremely gregarious in his character and would engage in conversation with anybody (in the nicest possible way) and discuss his mission in life to anybody. He told me of his previous life which seemed full, brimmed to the top. One of his jobs previously was as an accountant at a casino.
He was a great orator, a forward thinker and also more importantly a gentleman and a gentle man.
Thank you Fergus, without your skill in life and knowledge many people would be worse off in life today.
40 years of NASS at Wexham Park Hospital
After 40 years of a NASS group here at Wexham Park, we don’t know the start of our story as we no longer have contact with any of the founding members. There may have been links with the Canadian Red Cross Memorial Hospital at Taplow in Berkshire, which in its latter days specialised in childhood rheumatology under Dr Barbara Ansell until its closure in 1985. Our lead physiotherapist initially and for many years was Yvonne Rogers.
The minutes of the 1993 AGM (some 7 years after we started) show Jane Barefoot (who helped develop the first exercise cassette for NASS), attended and offered advice on how to run our joint hydro and gym sessions, a model that we still use today. The 1995 AGM recorded that NASS contributed £200 to get us started. And, in 1996 Fergus Rogers came to our AGM to celebrate our 10 years and later our 20 years of NASS Wexham Park. The AGM minutes show we discuss the same issues today as we did in the 1990s, but we are always grateful to our wonderful physiotherapists and how helpful the sessions are to our members and what good value they represent.
Some interesting figures have come to light from our register covering 1991 to 2020, recording 1194 sessions and helping 211 members in that time. Our highest attendance was during the early 1990s with 20-25 members per session, it fell in 2007 and 2011 to 13 and 12. We currently have 17 active members and 4 non-active members. 4 of our active members are from the 1990s, but we have had several new members this year. We are always happy to welcome more.
We are proud to be a long running NASS group, helping each other on our AS journeys.
Find out more about NASS Wexham
Gerry Dance
I will be forever grateful to NASS, as I’m certain I would not be where I am today without the super support I have received.
I have always been a keen runner and I’m still running at 64, but a lot slower and on trails. There are days when I can’t run at all. AS stops me in my tracks. But my motto has always been ‘Rest is Rust and Motion is Lotion’! Just got to keep on kicking AS into touch.
It was my wife, Mandy, who had the idea of me running the London Marathon in an orange skeleton suit. We had the NASS logo printed on it and it certainly made an impact, even though I couldn’t see where I was going. I always remember scaring sports presenter Denise Lewis, with her microphone, on Tower Bridge!
My proudest moment representing NASS was when I was chosen to carry The Commonwealth Games Baton in 2022 for my charity work and inspiring others to reach their goals through any kind of movement and exercise.
Happy 50th, NASS, here’s to many more golden years ahead!
Gerry is fundraising for NASS, running the Montane Summer Challenger South 108 mile trail race.
You can support Gerry with his latest challenge here: Gerry’s fundraiser for National Axial Spondyloarthritis Society
Jeff Wooldridge
Over the past years NASS and their staff have been such an important part of my incredible life, with wonderful fundraising events, conferences, workshops and even helping to set up NASS branches in Leicester.
With my fantastic consultant, Dr. Moorthy we took part in Radio Leicester’s broadcasts about (AS) and NASS as well as setting up a NASS display table with their information, booklets and exercise DVDs at Dr. Moorthy’s public and medical presentations and at his Leicester clinics.
The NASS support and advice when I lost my teaching job and their information for employers ensured that I was able to retrain and start a new very successful career for which I am for ever grateful.
Although I am now almost eighty-four, I am still a very active NASS member, attending conferences, on-line sessions and monthly donations. Thanks NASS
Ron Jones
My Membership number is 4437 and my card is dated November 1987, so it’s near 40 years since I ‘found’ NASS and became a proud Member. Joining was one of the most important decisions I have made in my life. The impact NASS has had on my understanding of, and my coping with, AS has been profound.
When I joined, I received my NASS handbook. It was like turning on a lightbulb. It was quite overwhelming and explained how I’d felt and what I’d had faced over the years.
In 2019 I attended my first NASS Conference and was privileged to attend a session led by Julian Knight, University of Oxford, on the Genomics of AS. This was another mind-opening day.
NASS has provided me with the opportunity to be an informed patient; able to question treatment, understand symptoms, make personal life decisions and be confident about the challenges AS throws up. The guides NASS produces have been enormously helpful; the staff are always positive and professional; the Forum an opportunity to update myself but also support others.
Long may it continue; a very Happy and Joyous Golden Anniversary.
Geoff Lindsay
November 1973. I’m 24. Every time I wear my tight Levi jeans with bell bottoms, essential for getting the girl, I get bad pain in my left hip.
December 1975, the pains have become so bad, I have to take 3 weeks off work. Hardly able to walk.
I don’t have a clue that I have AS. But I would limp another 20 metres to a drop kerb to avoid a step. Stairs are ridiculously painful.
I was undiagnosed until 2009, 36 years after first symptoms.
I was elated at diagnosis. At last, it’s not just a bad back. I immediately find NASS online. A whole world of help, support, meeting others. So many others know this story: you were alone but now you know, and you have NASS. You’re not alone any more.
Keep it going folks.
Celebrating 50 Years
