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

Donate

Chloe’s NF1 story

Chloe gives an honest assessment about coming to terms with having NF1 and how it has made her determined & strong

“Happy Easter”

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

Lisa helps Shine a Light on Neurofibromatosis in Belfast

Lisa has NF1, & lobbied the Belfast Lord Mayor to get Belfast City Hall lit up blue on Neurofibromatosis Day, 17th May

Alex’s NF1 story

Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications

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

Laura’s NF1 story

Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1

Disfigurement equality at work - research

This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements

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

NF1 stem cell research study

Julieta is carrying out stem cell research to understand brain development in those with NF1

NF Said

“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.”