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.

Nerve Tumours UK Art Drop 17 May 2023

White Label Editions & artist Anna van den Hoelden are fundraising by selling unlimited prints of World Strips III on 17 May

Stand up for Nerve Tumours UK Comedy Fundraiser

Join us on #WorldNFDay for a night of comedy at the Union Chapel, London

Prof. Meena Upadhyaya, OBE, shares her memories of attending the Coronation

Read more about a special day for Professor Meena Upadhyaya, Trustee & Member of the Nerve Tumours UK MAB

Teenage Transition Day, Guy’s Hospital NF Centre

Guy's Hospital Neurofibromatosis Centre celebrate the success of their first teenage day since COVID

India’s NF2 story & Jasmin’s ultramarathon

India describes her NF2 diagnosis & surgery - her older sister Jasmin is fundraising for NTUK with a 50k ultramarathon!

London Marathon 2023 Team NTUK

Congratulations to Team NTUK!

New ways to treat NF1 tumours with existing drugs

Researchers at the Living Systems Institute, University of Exeter, UK are researching new ways to treat NF1 tumours

Easter Message

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

Equality, Diversity and Inclusion in the Workplace

Nerve Tumours are here to support you in the workplace: iNForm; workplace equality research & creating an inclusive workplace

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.