Grace’s NF1 story - Nothing stops me

10 January 2022

My name is Grace, I am 18 years old. I was diagnosed with Neurofibromatosis Type 1 when I was 2 years old.

For me it has resulted in a few complications, such as an optic nerve glioma, scoliosis of the spine, café au lait marks and neurofibromas.

I had 18 months of chemotherapy to shrink the tumour behind my left eye, which unfortunately left me blind on that side. I’ve been in and out of hospital a lot over the years, with many MRI scans and appointments, but I’ve never let this stop me from doing anything.

Growing up, I was always active and had a love for swimming and triathlon. Due to my visual impairment, I was able to compete in the para category in my local triathlon club events and swimming galas.

My biggest accomplishment within sport was when I competed in the British Blind Sport National swimming championships in Birmingham, collecting a series of gold and silver medals over the years.

I am currently in my first year at university studying Health and Social which I hope will lead me into a career in which I can care for people, as I know personally how important the health and social care sector is and what a difference it can make.

Pat’s Triathlon Challenge

Pat is taking on a 3 day triathlon style challenge to raise awareness & funds for Neurofibromatosis research & support

World Neurofibromatosis Type 2 Day and 40 Years of NTUK

A celebration and call out to get involved, ask questions and join the community with Emily Owen

Shine A Light 2022 Success!

The Shine A Light 2022 campaign had over 200 buildings around the UK & the Republic of Ireland lit up in blue!

NF1 & our Xander

Xander's parents have a unique fundraiser raffle, especially for LITRPG fans, with the aim of raising awareness of NF

RideLondon FreeCycle Sunday 29th May

Join Nerve Tumours UK on the official RideLondon Day 29th May 2022

RAISING THE ROOF COMEDY NIGHT

First night on the NTUK 40 years Comedy Circuit 2022 at London's Backyard Comedy Club

Chloe’s NF1 story

Chloe gives an honest assessment about coming to terms with having NF1 and how it has made her determined & strong

“Happy Easter”

A message from Karen, our Charity Director, wishing you a very Happy Easter!

Lisa helps Shine a Light on Neurofibromatosis in Belfast

Lisa has NF1, & lobbied the Belfast Lord Mayor to get Belfast City Hall lit up blue on Neurofibromatosis Day, 17th May

Grace’s NF1 story - Nothing stops me

My name is Grace, I am 18 years old. I was diagnosed with Neurofibromatosis Type 1 when I was 2 years old.

Growing up, I was always active and had a love for swimming and triathlon. Due to my visual impairment, I was able to compete in the para category in my local triathlon club events and swimming galas.

My biggest accomplishment within sport was when I competed in the British Blind Sport National swimming championships in Birmingham, collecting a series of gold and silver medals over the years.