Following my niece's recent diagnosis with Neurofibromatosis Type 1 (NF-1), my family and I have made it our mission to raise awareness for the condition and support the amazing foundation which is Nerve Tumours UK.

They provide crucial support to people living with the Neurofibromatoses. It is a dominant genetic condition, meaning it can be passed on in families from one generation to the next through genetic inheritance. Similarly, about half of nerve tumour cases recorded have no previous family history of the condition. In other words, it can occur totally “out of the blue”. This is our case. 

Madinah's presentation of NF-1 includes congenital pseudoarthrosis of the tibia, making her condition even more rare, and the management more complex. 

The London Marathon is just one of the many challenges and events we would like to host over the coming years, to help raise awareness and support for her condition. It also gives us the opportunity of feeling like we can play an active role in her management, in what at times can feel like a situation which is completely out of our hands. 

To all those who have donated to my fundraisers in the past, I am immensely grateful. Any form of donation is a beautiful gesture and I completely appreciate how difficult it may be given the current economic climate. 

Thank you for all your support. 

Ish