Easter Message
06 April 2023
With our very best wishes for “ A Very Happy Easter” from all staff and trustees at Nerve Tumours UK
It has again been a particularly busy first quarter to the year. We have been working on developing the website, particularly aimed at healthcare professionals, and with our partners on some very interesting projects.
Very soon we will also skip into May, World Neurofibromatosis Awareness Month, but can we still call it that?
The medical profession have thrown down a challenge this year. As you may know, Neurofibromatosis Type 2 has been renamed NF2-related Schwannomatosis, and so we have been chatting to our partners overseas, particularly the Children’s Tumor Foundation in the USA, as to how we should now term the group of conditions that we represent and support, as the word “neurofibromatosis” should no longer be used as a group name. It looks like we obviously made the correct decision, in 2018, to call ourselves Nerve Tumours UK. In the meantime, our website, etc, will be in a state of flux until a group name is agreed, so please bear with us.
The team are looking forward to seeing many of you at the London Marathon in April and at the London-Essex Bike Ride in May, and may I take this opportunity to both thank all of our fundraisers and to wish them a safe and enjoyable day. Quite simply, without your support and fundraising, we would not be able to deliver our services.
Access to support services are still our key strategic objective, and with this you have the continued, complete and unwavering backing of the entire charity. We constantly look at how we can better meet all of our objectives, and as such we will again launch a survey on 01 May, asking for feedback from the community. It is so important that you have your say, so please do participate in this, and all of the surveys or research questionnaires that we distribute, on behalf of our research collaborators.
Please also look out for our activities during May, and help us to raise much needed and greater awareness of Neurofibromatosis Type 1, NF2-related Schwannomatosis and Non-NF2-related Schwannomatosis!
With my very best wishes,
Karen
Filter News
![](https://nervetumours.org.uk/images/made/images/common/Helen_Tomkins_370x280_800_600_s_c1.jpg)
Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More![](https://nervetumours.org.uk/images/made/images/common/Rebecca_Rennison_370x280_800_600_s_c1.jpg)
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![](https://nervetumours.org.uk/images/made/images/common/NTUK_Neuro_Alliance_Huntingtons_logos_370x280_800_600_s_c1.jpg)
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![](https://nervetumours.org.uk/images/made/images/common/research_images_370x280_800_600_s_c1.jpg)
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More![](https://nervetumours.org.uk/images/made/images/common/NF_Academy_group_shot_3_370x280_800_600_s_c1.jpg)
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![](https://nervetumours.org.uk/images/made/images/common/Sadali__Sanjana_370x280_800_600_s_c1.jpg)
University of Manchester Research
Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester
Read More![](https://nervetumours.org.uk/images/made/images/common/Manchester_Uni__NHS_logo_370x280_800_600_s_c1.jpg)
New Research Study for Children and Young People with NF1
Find out more about the study and how you can participate here
Read More![](https://nervetumours.org.uk/images/made/images/common/national-cancer-institute-bwMhq_itmMU-unsplash_370x280_800_600_s_c1.jpg)
Neurofibromatosis Type 2 name change
The new name for Neurofibromatosis Type 2 is NF2-related-Schwannomatosis (NF2)
Read More![](https://nervetumours.org.uk/images/made/images/common/Jensen_1_370x280_800_600_s_c1.jpg)
Jensen’s NF1 story
Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future
Read More