Nystagmus Network

The Nystagmus Network (NN) is a UK charity run by individuals and families affected by the eye condition nystagmus. We have one employee -- our development manager John Sanders – supported by volunteers and committee members. The committee chair is Kathy Williams and our president is Vivien Jones. NN was established in 1984 and is a registered UK charity (number 803440).

We work with ophthalmologists, orthoptists, optometrists (we were BCLA charity of the year 2009/2010), specialist teachers of the visually impaired, social workers, rehabilitation workers, VI organisations and other professionals to help them understand the problems caused by nystagmus and suggest ways to minimise them.

We belong to Vision 2020 and support the UK Vision Strategy. We’re represented on RNIB and local society committees by Pam, Kathy and John. Katy sits on the London Visual Impairment Forum. John is also on a couple of ethics committees and chairs the Wales Low Vision Services Development Committee.

Other close friends in the voluntary sector include the Albinism Fellowship, Guide Dogs, LOOK and NBCS (National Blind Children’s Society).

Follow the links below to view a specific section:

  1. Teasing and Bullying - some tips and ideas on what you can do.
  2. Northwick - Tales about a bear who has nystagmus.
  3. Wobbly Eyes - a child friendly guide to nystagmus.

Here are a few things young people have written about nystagmus in our Focus newsletter:

"Hi, I'm Luke and I have nystagmus. I don't really like P.E. at school because it's mostly ball games. I can't see the ball very well and no-one passes it to me because I will drop it, so I'm not that good at team games. That's why I like skateboarding."

Sana writes how she came to realise that she needed to sit at the front of the class: "I can still recall a humiliating childhood memory of being asked to read something on the blackboard. Because I was too far away I couldn't see anything. I muttered that I couldn't see which caused the whole class (including the teacher) to laugh! It was horrible! However, it has not affected my education. I did well at GCSE level and received an A and 2 Bs at A level."

And student and amateur dramatics participant Victoria says: "To me, life is a show. The world is a stage... and my Nystagmus? A minor technical hitch in the system. I'm not going to pretend growing up with Nystagmus has been easy, because it hasn't. But it's not as bad as you may think.