Your Stories

With your support, Geoff and thousands like him with axial SpA never have to face living alone with axial SpA.

“I collapsed with severe back spasms, and could no longer walk. It was pain that I had never imagined being possible.”

“Not all of us can do walks or exercise to raise funds, but gardening can be a lifeline to some.”

“Fundraising doesn’t need to be done in the typical ways.”

“Being a genetic condition, my axial SpA could easily be passed down to at least one or both of my children. I want to make sure that NASS is around forever to support them.”

“Running gives me the freedom I yearn for and most importantly it reminds me that my condition cannot have control over me.”

“The Great North Run allows me to merge my passion for running with my commitment to raising awareness about axial SpA.”

“Thanks to the support I have received from NASS, I am fundraising for them as I want to give others the chance to get diagnosed earlier that the current average time of 8.5 years. It shouldn’t take that long!”

“Running combines my favourite things – being outdoors and moving my body”

“I am not sure how long I will be able to be this active, but while I can, I am embracing it!”

“I’ve decided to take on the Snowdonia marathon for NASS to support the great work they do to help raise awareness of AS and help towards living with the condition, in particular, assisting with getting the right diagnosis at an early stage.”

"I run because my wife can’t. I challenge myself to complete hard things as she is doing every day in her life."

Sarah shares her journey to diagnosis, how she has used swimming to help manage her symptoms and as a way to incorporate movement and exercise into her routine.

“I think that the most important thing is to get out of the house (or bed!) no matter how sore my back is and get moving.”

Huge congratulations to Jamie, who finished rowing 3,000 miles solo across the Atlantic on Wednesday 21 February in 69 days, 17 hours and 56 minutes! An astonishing achievement, especially given that Jamie’s upper and lower back is fused due to having axial SpA.

“I have come across people who are thriving, struggling, and somewhere in-between. I have been in all three camps since having been diagnosed. I know what it’s like to feel desperate, vulnerable, lost (and worse) because of this condition.”

“I run because my wife can’t. I challenge myself to complete hard things as she is doing every day in her life.”

“I went on a search for support groups and came across NASS. I had so many unanswered questions, so I was so relieved to find a hub that could give me answers and assistance.”

“I don’t let axial SpA run or dictate my life. I’ve continued to enjoy trekking in the great outdoors and making the most of the opportunity to be active with the annual Walk Your AS Off step challenge during May.”

“When I saw Walk Your AS Off, it inspired me to want to be part of the community that I had found online, and to give me that extra motivation to keep moving on a daily basis.”

“Walk your AS Off is a great initiative, as I can tailor my steps to whatever I’m able to manage each day whilst still fulfilling the brief of keeping active and I’ll be fundraising at the same time!”

“When I saw Walk Your AS Off, I immediately signed up.”

“This is my first year helping to raise funds for NASS and I am delighted with the support of my friends and family during such a difficult time. I’m so lucky to be so supported.”

“If you are like me and have never been ‘into’ exercise and you struggle with pain, can I encourage you to just take one step at a time, even if that means just hobbling down the road, keep going, it will help in the end.”

“I have decided to take part in Walk Your AS Off to raise awareness but also to make sure I’m active every day and walking more.”

“I feel I’ve been given a new lease on life and am physically able!”

“Walk Your AS Off has given me a target and encouraged me to keep positive.”

Last year, gamer Flazzerty signed up to Gaming for AS and raised funds for NASS by livestreaming! He has shared his story about living with AS to raise awareness and inspire others to fundraise for NASS.

“I started yoga in lockdown and now practice it as much as I can. I find that yoga is everything I need to help manage my condition. Stretching, a little cardio, strength and very importantly, balance.”

“When I saw the Stretch-tember programme I thought that this would be a great opportunity for me to try a new gentle activity – something that I can add to my AS management tool kit!”

“It has made a huge difference to me in the way I manage my axial SpA.”

Sarah waited for 33 years to be diagnosed with axial SpA. Since her diagnosis, she has started taking biologics, reducing her symptoms. Now, not only has she has signed up to Stretch-tember, but she is also taking on a virtual Kilimanjaro climbing challenge too – all to raise vital funds for NASS and awareness of axial SpA.

Donate to NASS in a way that suits you. Whether it's making a regular donation, a one off donation, pledging to leave a gift in your will, or donating in memory of a loved one, every penny you donate really does make a difference to the lives of people with axial SpA with the help of NASS.

From quiz nights to coffee mornings and bake sales, organising a step challenge or a dress down day at work or school, or celebrating your birthday by asking your friends and family for donations to your Facebook Birthday page, there’s no limit to what you can do to organise your own fundraising for NASS!

Pick a challenge event for NASS! From 5ks to Marathons, inflatable challenges to walking challenges, there is no shortage of events that you can choose from to help raise funds for NASS.

Join a community fundraising event and fundraise for NASS. Whether you join Walk Your AS Off, Stretch-tember or Winter Walk Challenge, every penny you raise really does make a difference to the lives of people with axial SpA with the help of NASS.

Enter our latest NASS raffle or create your own online raffle or auction to raise vital funds for NASS.

Give as you shop online to raise vital funds for NASS! Whether you buy cards online for loved ones, do your weekly shop, purchase your favourite items on ebay, or shop online with easufundraising, every penny you donate really does make a difference to the lives of people with axial SpA with the help of NASS.

Find out why your support really does matter, the impact your support can have, and why your support has never been more urgent.