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
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Wass’ Everyday Battlers 10K Stratford Run
Wassim is running the 10K Stratford Run for Nerve Tumours UK. Here he explains his reasons as to why:
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Megan’s Skyfall
Megan is undertaking a sponsored skydive for NTUK as part of her travels! Find out more here
Read More![](https://nervetumours.org.uk/images/made/images/common/Glen-nd-fred-Page-Preview-800-x-500-px_800_600_s_c1.png)
Glen’s Half Marathon in Support of his Nephew Freddie.
Have a read about the special young boy who has inspired his uncle take on the New Forest Half Marathon
Read More![](https://nervetumours.org.uk/images/made/images/common/jessica-1Page-Preview-800-x-500-px_800_600_s_c1.png)
Jessica’s Amazing Fundraising Efforts
Have a read about the incredible 7 year old fundraising girl who is supporting research into NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/smiling-throughPage-Preview-800-x-500-px_800_600_s_c1.png)
Smiling Through
Have a read about Melanie and her courageous young son Emilio (NF1) and the impact NTUK has had on their lives.
Read More![](https://nervetumours.org.uk/images/made/images/common/mimi-nd-emilioArtboard-1_800_600_s_c1.png)
Our 2019 Christmas Card Competition Winner!
See our Christmas Card winning illustration here
Read More![](https://nervetumours.org.uk/images/made/images/common/Helen-2Page-Preview-800-x-500-px_800_600_s_c1.png)
Helen’s Story
Have a read of loving Mum Helen's Story and how she cares for her wonderful daughter Gaby (NF1)
Read More![](https://nervetumours.org.uk/images/made/images/common/LOOKSPage-Preview-800-x-500-px_800_600_s_c1.png)
Looks and Life: A summary of the study
Have a read about the findings from the UWE's "Looks and Life" Study
Read More![](https://nervetumours.org.uk/images/made/images/common/kate-and-esmePage-Preview-800-x-500-px_800_600_s_c1.png)
Kate’s Story
Have a read of Kate's inspiring story including the introduction of her beautiful daughter Esme, who has NF1, into the world.
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