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

Face Equality International - Shine A light on Neurofibromatosis
This year International Face Equality Week overlaps with World NF Awareness Day. Have a read of our collaboration here:
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Shine a Light on Neurofibromatosis 2019 on big screens near you!
Check out the areas where you can find eletronic billboards across the UK promoting our Shine a Light message
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Mary Thomas wins Specialist Nurse of the Year 2019!
Have a read about the Guy's and St Thomas' Celebration of International Nurses Day here
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Luke and his NF Ninjas
Have a read of Luke's story of growing up with NF and how he plans to bring his chidren up proud of their NF as well.
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Stannington Community Association’s Easter Fête
Stannington Community Association's Easter Fête was a success! Read about this years superb event here:
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London Marathon 2019: 26 hard miles for 26,500 people affected
Thank you so much to all our incredible Marathon runners for going the extra mile (or 26)!
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Take a look at our new YouTube Channel
Take a look at our new YouTube channel and how to subscribe here
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Meet Pearl
Pearl Kelly is 22, and has multiple complex problems caused by her NF1. Here she explains her outlook on life
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Meet Joanna
Joanna is a lecturer in Mitochondrial Genetics at Newcastle University, she recently ran the London Marathon. Meet her here
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