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/834872_1052_00091_370x280_800_600_s_c1.jpg)
Stuart’s Schwannoma Story Part One
Stuart describes how certain symptoms led to a Schwannoma discovery
Read More![](https://nervetumours.org.uk/images/made/images/common/image1_370x280_800_600_s_c1.jpg)
Joy’s NF1 story
Joy describes living with NF1; her son's diagnosis and support at school; fundraising and shining a light on NF
Read More![](https://nervetumours.org.uk/images/made/images/common/1_Onno_Faber_at_a_meeting_this_summer_to_organize_his_hackathon_OF_370x280_800_600_s_c1.jpg)
A man on a mission: Onno Faber and his NF2 journey
Onno Faber - since NF2 diagnosis aged 33, Onno is a man on a mission. Article courtesy of NEO.LIFE
Read More![](https://nervetumours.org.uk/images/made/images/common/Kate_Duncan_370x280_800_600_s_c1.jpg)
Kate’s NF1 Story & DanceAthon
Kate describes her son's NF1 journey and how NTUK supported them
Read More![](https://nervetumours.org.uk/images/made/images/common/all_runners_collage_370x280_800_600_s_c1.jpg)
Strictly Come Running: London Marathon Class of 2021
Congratulations to our class of 2021 London Marathon runners
Read More![](https://nervetumours.org.uk/images/made/images/common/NF2_meeting_2021_collage_370x280_800_600_s_c1.jpg)
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting
Read more about the England NF2 meeting - working together to improve the experience of NF2 patients
Read More![](https://nervetumours.org.uk/images/made/images/common/DT_2_370x280_800_600_s_c1.jpg)
Douglas Thomson’s NF1 Story
Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him
Read More![](https://nervetumours.org.uk/images/made/images/common/wing_walk_promo2_370x280_800_600_s_c1.jpg)
Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith
Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith
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