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.

Ella’s Story

Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.

Amit Ghose: The Unscripted Podcast

Caught the brand new pod by NTUK Ambassador Amit Ghose? Everything you need to know about The Unscripted Podcast inside.

Oliver’s Blog

Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.

3BM & Fusion’s Purple Forum nominate Nerve Tumours UK as their Charity of the Year

Take a look inside Purple Forum and how they're raising awareness and funds for the NF community.

George, Alisya’s & Leo’s NF1 Story

Find out how George and his team at Rolls Royce are raising NF awareness because of NF hero Leo.

World NF Awareness Month 2025: In Review

A look back at some of the highlights of World NF Awareness Month, May 2025.

Emily Owen: World NF2 Day

Our charity Ambassador offers her thoughts and guidance on NF2 day

Shine A Light on NF May 2025

The Shine A Light on NF 2025 awareness campaign had 176 buildings around the UK & the Republic of Ireland lit up blue!

Mohamed’s NF Story

Mohamed opens up about his NF journey and why he's now thriving after being diagnosed.

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.