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.

Shine a Light 2019 Success!

Check out some of the stunning photos from our extremely successful Shine a Light On Neurofibromatosis 2019 campaign

Nerve Tumours UK attends Royal College of Nursing Congress

Find out more about the RCN Congress and Nerve Tumours UK participation here:

Ava’s amazing work on World NF Awareness Day

15 year old Ava managed to generate awareness across the World as part of WNFAD read more about it here:

Face Equality International Week

Find out more about the crucial campaign Face Equality International Week

Face Equality International - Shine A light on Neurofibromatosis

This year International Face Equality Week overlaps with World NF Awareness Day. Have a read of our collaboration here:

Shine a Light on Neurofibromatosis 2019 on big screens near you!

Check out the areas where you can find eletronic billboards across the UK promoting our Shine a Light message

Mary Thomas wins Specialist Nurse of the Year 2019!

Have a read about the Guy's and St Thomas' Celebration of International Nurses Day here

Luke and his NF Ninjas

Have a read of Luke's story of growing up with NF and how he plans to bring his chidren up proud of their NF as well.

Stannington Community Association’s Easter Fête

Stannington Community Association's Easter Fête was a success! Read about this years superb event here:

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.