Shine A Light on Neurofibromatosis 2020
05 May 2020
The world may be struck by the Covid 19 crisis, but this month we are yet again shining a light on Neurofibromatosis in support of those affected by nerve tumours.
May 17 is World NF Awareness Day. Iconic buildings and landmarks around the world will show their solidarity with those affected by supporting the ‘Shine a Light on Neurofibromatosis’ campaign by lighting up in blue on the day. In 2019 more than 326 buildings and landmarks took part across the globe. Many of these were in Europe, and every part of the UK was represented. The worldwide total increased by more than 120 participations to that of the previous year, which shows how the campaign’s success and reach is growing. Please have a look at some of last years’ highlights.
This year we are saying thank you for all your support in our community and have asked once more as many buildings as possible to take part across the UK. Some of them that have already agreed to do so might not be able to on the day itself due to current restrictions, however you can support us on May the 17th by lighting up a “Shine A Light” candle. We would be delighted to share your photos of these on the day. Please send to info@nervetumours.org.uk.
Special “Shine A Light” candles are available from our shop. Light these to raise awareness and say thank you to our Specialist Neurofibromatosis Nurses. Of the many extra duties, the Specialists increased the helpline hours over recent weeks responding to your demand in this period of uncertainty. Blue is not only the colour of NF but also the colour of the NHS.
Carolyn Smyth Lead Specialist NF Nurse UK
“The health of our patients and families with NF remains our focus at this time. Please stay at home, protect the NHS, save lives. Stay safe and take care of yourselves.”

As a community we need to stay together and support each other, whilst spreading our message specifically on World NF Day 2020.
Stay tuned on our social media channels and get involved in our activities and raise awareness by taking part.
Filter News

Centre for Appearance Research - The Parenting Toolkit
Research evaluation to find out how effective ‘The Parenting Toolkit’ is at supporting parents of children with NF
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Celtic Crossing NTUK fundraiser
On Wednesday 28 June, a team of 8, led by Paul Aubery, paddled from the Isles of Scilly to Sennen Cove in Cornwall.
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NF Awareness Day Fundraiser at Fyling Hall School
Bea's school held a blue & green themed fundraiser on World NF Awareness Day
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Eden Study
Investigating early social, communication and attention development in babies who have NF1/ or a parent has NF1
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Bethany’s South Coast Challenge
Bethany is taking on the 25km South Coast challenge to give back after recovering from nerve tumour surgery
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Eden-P Research Study
Participants required for research study for pregnant women who have a family history of NF1
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Resources Survey: Initial Diagnosis
Take part in our survey and help shape Nerve Tumours UK's support service for those newly diagnosed with NF
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Appearance Collective NF1 support survey
Appearance Collective, Centre of Appearance Research (UWE) online survey on what support is needed for those affected by NF1
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