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
Nerve Tumours UK joins the “Embracing Complexity” Coalition
Find out more about the coalition we have decided to join
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Researching NF1
Rory Deasy has conducted research into the treatment of children with NF1. Here he talks about his research journey.
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Megan’s Journey
Megan talks about her experiences of being a student with NF and what she took away from the NF conference in San Fransico
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Aldo goes to Primary School
Find out more about the book aimed at helping people understand the life of an autistic boy going through primary school here
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Eva’s Races
Eva has run 3 races over the past year for NTUK, find out what has been motivating her here:
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Carl’s Story in memory of his sister who had NF2
Carl recently hosted his own wrestling event in memory of his late sister, find out more on his story here:
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NTUK Dolphins at the Swim Serpentine 2019
Find out more about the incredible day for all involved at Hyde Park here:
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Rotary’s Summer Evening Jazz Concert in aid of NTUK
Find out more about the amazing Jazz Concert that was hosted in aid of NTUK here:
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