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.
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Johnathan’s story
Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people
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Jen’s NF1 story
Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.
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Charlotte & Evie’s story
'Sticker Queen' Evie is 4 years old and was diagnosed with NF1 after tests for a 'lazy eye'.
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Luke’s Story
Luke had NF1 since childhood. Now an adult, surgery last year has enabled him to play football and do whatever he wants
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Charlotte’s Story
When Charlotte was 6, she was diagnosed with NF1, along with her brother & dad. Now she is on a mission to raise awareness
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Eden P for healthcare professionals
Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study
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Nicole’s story
Nicole has NF2, she describes the preparations and the absolute joyful experience of the birth of her son Lewis
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CAR Research - exploring family planning decisions
Research Advisors required to help explore what influences decisions about having children and what support would be helpful
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Corporate Fundraising 2024
Find out some of the different ways your company can support Nerve Tumours UK
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