Be as creative as Faye – Follow her social distance fundraising example!
21 January 2021
Faye decided that lockdown wasn’t going to stop her from supporting her sister, Lilly who has Neurofibromatosis type 1 (NF1). Lilly was first diagnosed with NF1 at the age of 5, after her parents noticed some strange bruise-like patches on her face and more dense freckling on her body as she got older. Lilly and her family starred in our Shine a Light on Neurofibromatosis movie, where they help to shed light on the challenges they face as a family and the invaluable support that our Specialist NF Nurses have provided, helping them to tackle each hurdle as it occurs.
Faye used one of her home-schooling days to think outside the box and “raise some money for Lilly’s charity to help Lilly”, says Mum, Sarah.
She then took it upon herself to start making “glitter bottles, drawing her own colouring books, making bracelets and pattern pictures. She then set up a little table, complete with hand sanitiser, placing it outside the house with a sign explaining what she was doing and why.”
Faye’s creative efforts ended up raising a substantial amount for Nerve Tumours UK.
“We are so proud of her and Lilly was overwhelmed.” – Mum, Sarah
You can follow Faye’s example and get creative with your fundraising! Social distancing shouldn’t stop us from helping others where we can. For inspiration check out our Fun-Raising article below.
Filter News

Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison
Read More
Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
Read More
Nigel’s story - Normal is as normal does
Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2
Read More
Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read More
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More_800_600_s_c1.png)
Oliver Bromley’s NF Story
Oliver Bromley, with NF1, was asked to leave a restaurant due to his appearance, sparking a call for greater awareness and ed
Read More
NF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More