Sam Jones, Nystagmus Network trustee and runner, introduces himself. I was born in 1983 – the year of the release of both the McNugget and Microsoft Word – with Cone Dysfunction and Nystagmus, which means fairly strong sensitivity to light (my eyes are secretly blue, but I wear brown contact lenses!), very short sight and occasional … Continue reading Sam to run London 10k for the Nystagmus Network
To achieve our objective of raising greater awareness of nystagmus, the charity publishes articles from time to time on different aspects of the condition. The article we submitted for publication most recently is entitled Wobbly Eyes and explains nystagmus in language a young child can understand. The text is adapted from our free to download … Continue reading Nystagmus Network article published
The biggest nystagmus event of the year takes place on Saturday, 29 September in Birmingham. This is our annual Open Day, where 200 nystagmus families get together to talk about research, education, support, assistive technology, mobility, education and general day to day living with a visual impairment. The Nystagmus Network is seeking sponsorship from commercial … Continue reading Sponsors sought for Open Day 2018
Priority booking for free places at our Open Day 2018 will open to members of the Nystagmus Network at midday on Thursday 28 June. Remaining tickets will go on general sale a month later, on 26 July.
We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism. Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If … Continue reading Are you over 60 with ocular or oculocutaneous albinism?
Fight for Sight has today announced a call for Small Grant Award applications. The UK’s leading eye research charity is this year able to offer thirteen awards to fund sight saving clinical research, ten of which are being jointly funded with other charities. NEW THIS YEAR Fight for Sight / Nystagmus Network offer TWO Small … Continue reading Fight for Sight partners with the Nystagmus Network for its next grant round
At 12 midday on Wednesday 20 June, Nystagmus Awareness Day, we can get the whole world talking about nystagmus across Facebook and Twitter. All you need to do to take part is follow this link to sign up. Please join us to get the word nystagmus rippling out across the world.
Sue attended a meeting yesterday at the House of Commons of the All Party Parliamentary Group for Eye Health and Visual Impairment. The subject of the meeting was eye research. Sue was the guest of Fight for Sight, whose Chief Executive, Michele Acton, gave a powerful account of the current sight research position and admirably … Continue reading Sue attends APPG meeting on eye research
Have you done something amazing, something you never thought possible, because you have nystagmus? Has your child exceeded all your expectations? If so, we want to hear from you. Last year we heard about the fantastic swimming and fundraising achievements of Annabelle, Tyler and Poppy. This year we want to hear your stories. Between now and … Continue reading How amazing are you?
On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk? On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 … Continue reading Nystagmus in the open and the Big Blind Walk