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
We are Family London Marathon
Have a read of the remarkable journey the White family has undergone in support of their young daughter Gaby who has NF.
Read More
Shine a Light on Neurofibromatosis
World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.
Read More
Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way
Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:
Read More
Meet Rachael
Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,
Read More
Meet Our Two Marathon Runners from China
Meet our two runners from China who like to partake in marathons across the globe.
Read More
Andrew Leak is set to Complete 10 London Marathons!
Andrew Leak is about to complete his mission of running 10 London Marathon's! Find his press release here
Read More
Meet Gemma
Gemma Barnish has NF2 and has recently gotten married, find out more about her intriguing life here:
Read More
Kidz to Adultz Exhibitions
Kidz to Adultz offer a number of free exhibitions across the year to offer adivce and information on living with a disability
Read More
Centre for Appearance Research at UWE want you to help test online support for people with Nerve Tumours
Centre for Appearance Research are looking for people with Nerve Tumours to test their new online support
Read More