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
Eashan’s NF1 story
'Why Run'... Eashan was diagnosed with NF1 after losing his eyesight when he was 5. His mother Jen tells his story.
Read More2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
Read MoreDisclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison
Read MoreJo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
Read MoreNigel’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 MoreMeet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read MoreMeet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read MoreWorld 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 MoreCAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More