NF Said
05 February 2021
Daisy is taking on a 38-mile running challenge for her sister Millie who was diagnosed with NF Type 2 roughly two years ago, after a number of misdiagnoses. She wants to run one mile for each person who is diagnosed with NF Type 2 each year – a self-proclaimed non-runner she will be lacing up her running shoes throughout the month of February to raise funds in support of her sister.
Daisy and Millie are best friends and despite a five-and-a-half-year age gap, they both have a love of netball. Millie’s Neurofibromatosis has knocked her confidence recently but her sister Daisy was there to pick her up.
“I wanted to build her confidence so dropped down teams so I was able to be on the court with her at the same time, it didn’t take a lot for her to get back into the swing of things.”

Daisy wants to raise awareness of NF Type 2 so more people understand the difficulties and challenges people with Neurofibromatosis face in their day to day life.
Help support Daisy on her running challenge
Filter News

Alex’s NF1 story
Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications
Read More
Sumeeth’s Schwannoma story
Sumeeth, thought nothing of a muscle twitch after a hangover - it was the first symptom that led to a Schwannoma diagnosis
Read More
Laura’s NF1 story
Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1
Read More
Disfigurement equality at work - research
This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements
Read More
RAISING THE ROOF: CHARITY COMEDY NIGHT IN AID OF NERVE TUMOURS UK
Join us in London on our first comedy night to celebrate 40 years of Nerve Tumours UK
Read More
NF1 stem cell research study
Julieta is carrying out stem cell research to understand brain development in those with NF1
Read More
Ava-Lily’s NF1 story
Ava-Lily is thriving at school despite various NF1 related difficulties - read her story
Read More_370x280_800_600_s_c1.jpg)
Westminster Virtual Rare Disease Day 2022 Reception
NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases
Read More
Rare Disease Day 2022
Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022
Read More