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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Diana’s One Month of Rowing for Neurofibromatosis
Diana is taking on an epic 150k rowing challenge - 5k per day to support her daughter Ellie & our NF community
Read More![](https://nervetumours.org.uk/images/made/images/common/Autistica_Research_Festival_Branded_Header_preview_800_600_s_c1.png)
Autistica Research Festival 2021
See how this year's event went and find out how you can watch the best bits if you couldn't make the conference.
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_1837_Carol_Irving_Nurse_Portrait_preview_800_600_s_c1.jpg)
OneMoreNurse joins the NTUK team in Leeds
We're delighted to announce our new Specialist NF Nurse for Leeds, find out more
Read More![](https://nervetumours.org.uk/images/made/images/common/Nerve_Tumours_UK_Running_Team_Asics_10k_2021_preview_800_600_s_c1.png)
The NTUK running team kick starts 2021’s running season in this year’s Asics 10k!
Check out the year's first major running event - see how our NTUK running team got on!
Read More![](https://nervetumours.org.uk/images/made/images/common/alexs-12-monthsPage-Preview-800-x-500-px_800_600_s_c1.png)
Alex’s 12 months of Running
Alex has completed his incredible 12 months of running for NTUK, totalling a whopping 80km – see how he got on!
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_3058_colins_highland_walk_370x280_800_600_s_c1.png)
Colin’s West Highland Walk for NF
Colin has completed his epic journey across the highlands to raise awareness for our NF community. See how he got on.
Read More![](https://nervetumours.org.uk/images/made/images/common/Buzz_lightyear_challenge_image_1_-_previerw_800_600_s_c1.png)
To Infinity & Beyond!
Cameron takes on an incredible quest for NF - 34 miles running, 34 miles cycling, 34 miles rowing and a 1 mile walk with Roo!
Read More![](https://nervetumours.org.uk/images/made/images/common/Runderpants_website_header_-preview_800_600_s_c1.jpg)
Runderpants Is Back!
Take part in an event that's absolutely pants! Runderpants is a fun run, in your pants, for our NF community!
Read More![](https://nervetumours.org.uk/images/made/images/common/Image_of_Young_People_previoew_800_600_s_c1.jpg)
TABI (Teen Appearance and Body Image) - CAR Research Study
Find out how you can take part in the Centre for Appearance Research's study for Young People
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