NF & Sport: Joy’s Journey
22 July 2025
I have Neurofibromatosis Type 1, and sport - especially running - has made a massive difference to my life.
– Joy"I recently got the incredible news, that my running and strength training have improved my bone density so much, that I no longer need medication."
I began running in 2019. At the time, I was feeling unfit and overwhelmed with stress at work. I knew I needed to make a change, so I started running small loops around the block with a friend. Soon after, we found a RaceFit course advertised by Massey Ferguson Running, a local running club . We signed up, and after completing it, I entered my first 10K. I was instantly hooked.
One of my early milestones was the ASICS London 10K, which I ran in support of Nerve Tumours UK. Running through the streets of London, proudly wearing my charity vest, was an unforgettable experience.
I was so proud to raise money and awareness for a cause so close to my heart. That was just the beginning. I took on a few half marathons, and then, somewhat impulsively, I signed up for the Chester Marathon.
Once again, I ran in my Nerve Tumours UK vest, and the experience was amazing.
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As I continued to improve, I set my sights on the Manchester Marathon. But then, shortly after signing up, I broke my foot. It was a huge setback.
With support from Nerve Tumours UK and NF Specialist Nurses, I received a bone density scan and was devastated to learn I had osteoporosis. Still, I didn’t give up. I committed to strength training, slowly recovered, and eventually made it to the start line of the Manchester Marathon. I finished in under 4 hours - something I never thought possible. That fracture made me realise just how much running meant to me.
"It wasn’t just about fitness anymore - it had become a lifeline, an escape, a passion. I wanted to give something back"
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So, I qualified as a running leader with England Athletics and began leading sessions with my club. I started volunteering, pacing at races, and helping others believe in themselves. To my surprise and honour, I received the England Athletics West Midlands award for Newcomer to Volunteering.
Running has supported my mental health and given me strength in my fight against NF.
When I run, I can forget everything else - I can just be me.
This year, I achieved a lifelong dream: running the London Marathon. I proudly wore my Nerve Tumours UK orange vest and gave it everything I had, and fundraising for Neurofibromatosis awareness.
Running has changed my life.
Find out more about Joy's NF1 journey by clicking here
Are you living with an NF diagnosis? Has sport changed your life?
Let us know and share your story info@nervetumours.org.uk
"Sport isn't just about physical fitness or competition, it's a gateway to confidence, community, and self belief"
Laura Hillyard, Founder, YAura Agency
Stay tuned with our patron paralympian Thomas Young on his road to the Paralympic World Championship in September 2025.
