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.
Filter News

Rarefest 2020
RAREfest20: a free virtual, interactive science, technology, advocacy & arts exhibition with a rare twist. Visit exhibition
Read More
Kebabathon for Nerve Tumours UK
Find out why Des is taking on this Mammoth Meat Mission for Nerve Tumours UK
Read More
Coronavirus and your Mental Health
Mind offers support and advice to help you cope with the impacts of Coronavirus on your mental health and wellbeing.
Read More
2nd Lockdown Announcement
A message from Karen our Charity Director on a 2nd national lockdown - we're here for you
Read More
Dexter’s Story
A journey of acceptance with NF1 and understanding that what makes us different from one another is a gift.
Read More
#OneMoreNurse
Help support our Campaign, we need your ongoing support now more than ever to continue our vital Specialist NF Network
Read More
#DareToThinkRare
Find out how you can take part in this year's Student Voice Prize 7th annual, international essay competition!
Read More
RARE Champion of Hope Celebration
Join this years RARE Champion of Hope Awards hosted by Global Genes and be inspired!
Read More
A Big “Thanks” for Team Nerve Tumours UK running the London 2020 Marathon!
We want to give a great big thank you to all of you who took part in this year's Virtual London Marathon!
Read More