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.

Mindful Parenting Study

Research study: Mindful Parenting Programme for parents or carers of children aged 4-16 living with a visible difference

Adam Buxton and some colleagues - NTUK Comedy Night

Join us at the Union Chapel, London on Thursday 24th November for the latest comedy night to celebrate 40 years of NTUK

We know 26, 500 people who need your help

To expand our Specialist Neurofibromatosis Network, we need to continue raising awareness of what we do

The New National Helpline

The National Helpline is expanding to Monday, Wednesday and Friday, from early October

London Marathon 2022

Congratulations to our 2022 London Marathon runners - thank you from the NTUK team

Hannah’s NF1 story

9 year old Hannah is running the Junior Great North Run, so other children with NF can also have access to doctors & nurses

Great North Run 2022

Great North Run 2023 - check out some of our runners' photos

Sam’s Marathon

Sam, our Specialist NF Nurse for Merseyside & the North West, is running the London Marathon - her very first Marathon!

NF Patients Community Day

The NF Patients Community Day is on Sunday 9th October 2022 - register to attend virtually

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.