Nerve Tumours UK
1.What does your NGO do to support people with disfigurements?
Nerve Tumours UK provides support and information, as well as raises awareness for over 26,500 people in the UK who have Neurofibromatosis (NF1 and NF2) and Schwannomatosis. We’re here to improve lives for people with nerve tumours, while working towards the day when these conditions will be cured.
2. What does face equality mean to you?
We want to help raising awareness to the many groups and organisations, big and small, national and international, which support and represent people with disfigurements and thereby to create the critical mass and solidarity needed to gain global attention for the campaign for face equality. Neurofibromatosis can lead to disfigurements and therefore impact on those affected with NF1, NF2 and Schwannomatosis.
3. What has your NGO got planned for international face equality week 2019?
Shine A Light on Neurofibromatosis returns for 2019.
In association with our friends “across the pond” in the United States, the Children’s Tumour Foundation, we are excited to announce the return of the “Shine A Light on NF” campaign to raise awareness for Neurofibromatosis by lighting up landmarks and buildings on World Neurofibromatosis Awareness Day – May 17th.
Neurofibromatosis, the umbrella term for a group of genetic conditions (NF1, NF2, and Schwannomatosis) literally translates to mean “Nerve Tumour Increase”. We want to raise as much awareness as we can to help the condition receive the support and funding it deserves.
World Neurofibromatosis Awareness Day falls on Friday 17th May this year!
We are asking iconic landmarks, buildings, homes, to light up blue for Nerve Tumour patients worldwide and have so far reached nearly 100 in the UK alone.
4. What are your hopes for the international face equality movement and what would you like the movement to achieve in the future? How does your NGO fit into this?
Nerve Tumours UK is working together with face equality international to tackle these injustices, enable the sharing of best practice and be an incubator (capacity-builder) for NGOs to campaign for face equality and against disfigurement discrimination in their own settings. It will be a learning exchange and set global standards on how to challenge disfigurement discrimination (eg: at work) and promote face equality (eg: in schools). We are happy to take part in the co-ordination of an International Face Equality Day in May 2019 and in future years.
Arooj Aftab, Influencer and Fashion Blogger
“I decided that I should embrace my NF – Although I’ve revealed my condition to my followers I don’tknow if I’m at the stage where I want to constantly show it with fitted clothes. But I do feel like people understand why I wear baggy clothes now and I feel like much more of a real person online.”
Karen Cockburn, Charity Director of Nerve Tumours UK
“It is only by raising understanding and awareness that we will be able to meet our goals of providing first class support to those who need our services.“