We’re Here for You, Our NF Community.
09 September 2020
Hello Everyone,
I just wanted to say a very big thank you to absolutely everyone, who has helped us to keep the charity running as usual: by their fundraising efforts; assistance and guidance; and also those who helped to keep up our spirits in the “virtual” head office, over the last six months. Members, supporters, friends, families, the NF medical teams at St Mary’s and Guys & St. Thomas’ and even our local MP! Thank you, to each and every one of you!
We are not sure what the next six months, or even the next year, will bring, but we’re here to take your calls and help where we can. This is a whole new territory for all of us, so please bear with us if things take a little longer, we will all get sorted in the end, but do let me know if there are any major issues, and we will try to help.
We are aiming to move back to the office in the next couple of weeks, a very different looking office as we will all be working behind screens, etc, and apparently you can no longer even share biscuits …….but it will be lovely to be back there with the team!
The shop distribution should return to normal, which is especially important as we will soon launch the sale of our Christmas Cards and other festive items! In the meantime, if anyone has any imaginative and inspiring ideas about how we can raise funds safely in this new, odd world that we live and work in, please do let the team know.
Please do continue to follow the Government guidelines and do take care.
With my very best wishes,
Karen
Filter News

NF1 & our Xander
Xander's parents have a unique fundraiser raffle, especially for LITRPG fans, with the aim of raising awareness of NF
Read More
RideLondon FreeCycle Sunday 29th May
Join Nerve Tumours UK on the official RideLondon Day 29th May 2022
Read More
RAISING THE ROOF COMEDY NIGHT
First night on the NTUK 40 years Comedy Circuit 2022 at London's Backyard Comedy Club
Read More
Chloe’s NF1 story
Chloe gives an honest assessment about coming to terms with having NF1 and how it has made her determined & strong
Read More
“Happy Easter”
A message from Karen, our Charity Director, wishing you a very Happy Easter!
Read More370x280_800_600_s_c1.jpg)
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
Read More
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