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
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma
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Ellen’s Story
Read Ellen's story, how she recovered from 'radical surgery' and why she's raising funds for NTUK.
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Celebrating Trustees Week
It's National Trustee Week: Meet the people who keep NTUK moving.
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Men’s Health Month
We're making sure that men with NF are prioritising their health, both in and out of the workplace.
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Irfan’s Story
Irfan discusses his NF journey, how he transformed uncertainty and isolation into community and understanding.
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Kelly’s Story
Find out how Kelly discovered her confidence after overcoming testing years at school and college.
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Awareness Walks
Raise awareness with an organised walk within your community. We've put together some pointers to help you with planning.
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Meena’s Awareness Raising Coastal Walk
NTUK trustee Prof. Meena Upadhyaya treks the Welsh coast to raise awareness of NF and rare diseases.
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Breast Cancer in Neurofibromatosis Type 1
Professor Gareth Evans takes us through a summary of the current research around the links between NF1 and breast cancer
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