A Message from our Charity Director
23 December 2021
Dear Friends & Supporters,
Another year that did not quite go to plan, or what we had all wished for! However, it was wonderful to see things were getting a little more back to normal for a good part of the year. We were all so delighted to be back together in the head office, but now the dreaded “work from home” has raised its ugly head again. Let’s hope this latest variant does not cause another lockdown.
As I said this time last year, one of the most important things from any disaster in life is how you react, learn from the experience, and then how you move on. We have learnt a great deal, especially how we can deliver and adapt our services, to continue to reach as many people as possible.
We have continued to carefully manage the charity, especially the finances, and so over the last calendar year, this has meant that we have been able to introduce three new members into the Specialist Support Team: Helen Swann, who is based at Cardiff University Hospital; Carol Irving, who is based at Chapel Allerton Hospital, Leeds; and Siobhan Harding, who is based at Belfast City Hospital. I am absolutely delighted to welcome them to the team, and do let us know if any of you wish to be connected to the new members. As a charity, we strongly believe that regional nurses are so vitally important for the community, and we actively continue to fundraise for more posts.
However, these regional services cost a great deal of money and so we are extremely grateful to those of you, who are continuing to fundraise for the charity, even though the circumstances are not easy.
Although we could not hold a formal gathering at the London Marathon this year, we were delighted to see many of you complete the race. Likewise, we are grateful for the many who took up the Shine A Light Challenge during World NF Awareness Week. Your involvement is so important, it does not matter how big an event is, so long as one individual goes away knowing about Neurofibromatosis for the first time. Hopefully the climate will change and we will be able to see many more of you in 2022 at all of our events.
For the NF Community, 2022 is quite a special year, as it is the 40th Anniversary of the charity being founded. We are hoping to host a number of special events and to meet up with many of you, who have been involved with the charity over the years, restrictions permitting. If anyone wants to share their story from years past, please do get in touch with us.
Thank you so much for all the fantastic support you have given to the charity over the past year, and with best wishes to you all from the entire team here at Nerve Tumours UK, for a “Very Happy Christmas”, and a wonderful 2022!
Regards
Karen
Filter News
Crazy Nanna Hazel & Evie
4 year old Evie's NF1 diagnosis impacted the whole family. Hazel shares Evie's story from a grandmother's perspective
Read More2024 Friedrich von Recklinghausen Award
Professor Rosalie Ferner, Trustee and Member of the Nerve Tumours UK Medical Advisory Board receives this year's award
Read MoreBecome a Trustee
Nerve Tumours UK are looking for at least two new trustees to join the Board. Find out more
Read MoreGuy’s Hospital NF Centre Coffee Meetings
Guy's Hospital Neurofibromatosis Centre Coffee Club 2024
Read MoreLiz’s NF1 story: This is the real me
Liz describes growing up with NF1, difficulties at school, spinal surgery and raising awareness by writing a poem about NF.
Read MoreStronger Together Rare Conference
Read this review of the conference and find out where to access further support
Read MoreGisela’s NF2 story
Gisela has NF2 & has a positive outlook on life, she has just completed a 265km walk during World NF Awareness Month
Read MoreOxford’s John Radcliffe Hospital celebrate NF2 Awareness Day
We set out to promote and educate people about NF2 & the service offered in Oxford & Southwest Region for patients
Read More