To Infinity & Beyond!
01 July 2021
Roo, my nephew, was diagnosed with Neurofibromatosis Type 1 at the age of 17 months. This came as a shock to everyone. Researching the condition, although over 26,500 are living with the condition in the UK, not many people have heard of Neurofibromatosis and its impact. The first few weeks were a very scary time, with so many unanswered questions, until someone pointed us in the direction of Nerve Tumours UK. Being the UK’s leading charity on NF Type 1 and NF Type 2 they supplied us with all the information we needed. They were a great reassurance in such a dark and difficult time.
My nephew Roo continues to develop symptoms, one being early signs of speech and learning difficulties, as well as autism.
For a child of his age his speech is very limited, and he can only say a couple of different words but with the support of the NF community and Nerve Tumours UK, the future doesn’t look quite as scary.

Having found such a great support network, I did not hesitate to support Nerve Tumours UK with the aim to raise awareness of Neurofibromatosis. Between 14 & 20 June, I travelled the distance of 103 Miles! (the same mileage from Leicester to London). I decided to split the distance equally between 3 physical activities: Running, Cycling and Rowing, with the final mile being a walk with Roo himself. All of this was done at my local leisure centre.

Roo’s favourite thing in the whole world is Toy Story, however, more specifically Buzz Lightyear, resulting in his favourite word to say being ‘Buzz’. In honour of this, I did the whole challenge dressed as Buzz Lightyear!
All the donations raised are going straight back into the NF community and helping people just like my nephew Roo. I want people to know that being born with Neurofibromatosis doesn’t stop you from reaching your dreams, and just like Buzz Lightyear always says…"TO INFINITY AND BEYOND!"
Filter News

Johnathan’s story
Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people
Read More_370x280_800_600_s_c1.jpg)
Jen’s NF1 story
Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.
Read More_800_600_s_c1.png)
Charlotte & Evie’s story
'Sticker Queen' Evie is 4 years old and was diagnosed with NF1 after tests for a 'lazy eye'.
Read More_800_600_s_c1.png)
Luke’s Story
Luke had NF1 since childhood. Now an adult, surgery last year has enabled him to play football and do whatever he wants
Read More_800_600_s_c1.png)
Charlotte’s Story
When Charlotte was 6, she was diagnosed with NF1, along with her brother & dad. Now she is on a mission to raise awareness
Read More
Eden P for healthcare professionals
Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study
Read More_370x280_800_600_s_c1.jpg)
Nicole’s story
Nicole has NF2, she describes the preparations and the absolute joyful experience of the birth of her son Lewis
Read More
CAR Research - exploring family planning decisions
Research Advisors required to help explore what influences decisions about having children and what support would be helpful
Read More
Corporate Fundraising 2024
Find out some of the different ways your company can support Nerve Tumours UK
Read More