Libby and I have been incredibly lucky to obtain two places to wheel/run in the London Marathon 2025 and to take on this challenge with Nerve Tumours UK.

For those that don't know, our son William was diagnosed with Neurofibromatosis (NF1) at a young age. This condition loosely translates to mean ‘nerve tumour increase’ and is a set of complex genetic disorders that affects almost every organ system, causing tumours to grow on nerves in the brain and throughout the body. Although the condition is not widely known, it is amongst the most common inherited disorders, affecting more children than cystic fibrosis.

William has been fortunate enough to only suffer with mild symptoms so far, but the Charity has been invaluable in providing support and guidance to us, from regular check-ups with Specialist Doctors, to support in school from the Nurses that the Charity funds. The Charity itself is relatively small, and is always looking for support through fundraising.

We would love to be able to raise a significant amount of money to enable the Charity to support other families in the same way as we have been.

The Charity “Nerve Tumours UK” provides support and information and raises awareness on behalf of over 26,500 people in the UK who have Neurofibromatosis (NF1 and NF2) and Schwannomatosis. Neurofibromatosis is an incredibly variable condition, and in most cases, is very mild although it can also be debilitating, and in some cases, life-threatening. This means that it is a challenging disorder for neurologists to treat, partially because it’s so unpredictable.

They are dominant genetic conditions, which means that they can be passed on in families from one generation to the next through genetic inheritance. Similarly, about half of nerve tumours cases recorded have no previous family history of the condition. In other words, it can occur totally “out of the blue”.