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
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.
Read More
Laura’s fundraising for Shine A Light 2026
Laura and her mum fundraised for World NF Day on Sunday 17 May.
Read More
Ralph’s NF1 Story
Three year old Ralph has NF1 and has been undergoing treatment to preserve his eyesight, read his story.
Read More
Mel’s Swimming Challenge
Specialist NF Nurse/ Advisor Mel Murrell is going to great lengths with her swimming challenge!
Read More
Reflecting on World NF Awareness Month 2026
Looking back on World NF Awareness Month 2026.
Read More
Nerve Tumours UK Virtual Coffee Mornings
Chat and connect in our Virtual Coffee Mornings. NF2 Coffee Morning on 1st July 2026
Read More
Raising Awareness: Georgia’s Blog
My name is Georgia Baum, I’m 25 years old and an Ambassador for Nerve Tumours UK. Read my Blog and follow my journey!
Read More
NF2 and Us: Our Story
Read about Reece and his family, and their experiences living with NF2.
Read More