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
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Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
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NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
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Running for a Cure: Laura and Gonzalo Take on Half Marathons for NF1
Laura and Gonzalo; founders of CureAge Therapeutics, lace up for NF awareness.
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Diet, fatigue and NF1
Take part in this research study which will explore the connection between diet, fatigue and NF1 in children and young adults
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Our Ambassadors
NTUK is delighted to introduce you to our three new ambassadors, Emily Owen, Georgia Baum & Amit Ghose.
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London Marathon 2025 Team NTUK
Congratulations and a big THANK YOU to Team NTUK for their superb efforts
Read MoreIan’s Story
Read Ian's story and why he's going the extra mile for NF awareness and his daughter Emily
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London Marathon 2025
Meet our 2025 London Marathon fundraisers—each running to support those affected by NF. Read & share their stories.
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Nerve Tumours UK Virtual Coffee Mornings
Chat and connect in our newly announced NTUK Virtual Coffee Mornings
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