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.”
![](/images/common/carolyn-smyth_1024x768.png)
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
![](https://nervetumours.org.uk/images/made/images/common/adam-buxton-comedy-night-Page-Preview-800-x-500-px_800_600_s_c1.png)
Adam Buxton Comedy Night in aid of Nerve Tumours UK
Our charity comedy night was certainly nothing short of a success. Find out exactly what went down here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Megan-Crews--meet-meganPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Megan
Megan Crews is a 30 year-old special needs tutor in Salisbury. She recently spoke out in The Sun.
Read More![](https://nervetumours.org.uk/images/made/images/common/Fabio-researchPage-Preview-800-x-500-px_800_600_s_c1.png)
How does your visible difference affect you?
Researchers would love to understand your experience of how a visible difference affects your daily life
Read More![](https://nervetumours.org.uk/images/made/images/common/GABYPage-Preview-800-x-500-px_800_600_s_c1.png)
Gabriella’s Story
"I believe everyone should think the same and be kind to people however they look and whatever condition they have."
Read More![](https://nervetumours.org.uk/images/made/images/common/OMN!!Page-Preview-800-x-500-px_800_600_s_c1.png)
One More Nurse Appeal Press Release
Have a read of our #OneMoreNurse appeal press release here:
Read More![](https://nervetumours.org.uk/images/made/images/common/EDEN_study_image_800_600_s_c1.png)
Recent Research from DR Shruti Garg
Find out more about some of the recent research carried out by DR Shruti Garag
Read More![](https://nervetumours.org.uk/images/made/images/common/Research-UWEPage-Preview-800-x-500-px_800_600_s_c1.png)
Advisory group of parents needed to help shape future research
Maia Thornton is a PhD student looking for an advisory group of parents who's child has an appearance altering condition
Read More![](https://nervetumours.org.uk/images/made/images/common/Olivia-Community-Spirit-Page-Preview-800-x-500-px_800_600_s_c1.png)
Olivia’s Story
Olivia is an enthusiastic and determined young girl. Have a read of her inspiring story here!
Read More![](https://nervetumours.org.uk/images/made/images/common/Lottery-fundingPage-Preview-800-x-500-px_800_600_s_c1.png)
The Big Lottery Fund pays for 2 Patient Info Days
Nerve Tumours UK receives Lottery funding
Read More