Charity: Nystagmus Network
The Nystagmus Network is the foremost charity supporting people affected by nystagmus in the UK. Nystagmus is a complex eye condition, characterised by involuntary movements of the eye. The eyes appear to wobble or flicker from side to side or up and down and it affects at least 1 in 1,000 people. The charity was founded in 1984 by Vivien Jones after her son was diagnosed with nystagmus when he was three months old and has grown exponentially from very humble beginnings to the hi-tech digital online presence of today. The Nystagmus Network has been at the forefront in promoting a better understanding of nystagmus as well as leading the way in funding research to find effective treatments. The charity offers its members the opportunity to get as much information about the condition as possible and through its support services, the Nystagmus Network ensures that, following diagnosis, there is somewhere for a family to turn to. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day. To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open'.