Ian’s Story

Our daughter Emily was diagnosed with NF1 at birth. This was detected with birth marks on her body. As you can imagine this was strange to us as we had never heard of Neurofibromatosis or NF1 before. 

Since Emily’s birth we have strived to fundraise for Nerve Tumours U.K whenever possible. We came across Nerve Tumours over 10 years ago when we were first offered advice on NF1 through one of their specialist advisers, Carolyn.

Carolyn was very useful in giving us the general facts about the condition. One thing we did notice is that NF1 was not that well known but hopefully over time we can see doctors and even teachers learn more about this condition. The more information they have the better.

I think in education terms, teachers would benefit greatly from more information on how to help a child with NF with their learning in school, and this should start right from Primary level.

This year I will be doing my second London Marathon and I’m excited to be taking part again. I did my first one in October 2022 and I can say that the atmosphere was absolutely amazing from the start right until the end. I’ve also done other events for Nerve Tumours such as the London 100 bike ride and Swim Serpentine; both events were fantastic and so well organised. I earned the London Classics medal for completing these three events, which was fantastic, and something I never thought I would achieve years ago. 

The fundraising has been going well, and I’m getting closer to my target. People have been very supportive and generous. Our hope in the future is that we learn more about this condition, and work together for the development of better treatments.

For more information on how we can help raise awareness of NF within your school or workplace; take a look at our INForm programme. If you've been affected by any of the issues covered in Ian's story, you can call our Helpline on 07939 046 030 (Mon, Wed, Fri 9-5PM).