Nystagmus Network

The Nystagmus Network is the oldest and best recognised charity supporting those affected by nystagmus in the UK. Nystagmus is a complex eye condition that is characterised by involuntary movements of the eye. The eyes appear to wobble or flicker from side to side or up and down. Nystagmus is caused by abnormal functioning of the part of the brain which regulates eye movement and positioning and it affects around 1 in 500 people. The charity has grown exponentially from very humble beginnings to the hi-tech digital online presence of today.

The Nystagmus Network began in the early 1980s. Vivien Jones, the charity’s Founder and President, was a young mum with a baby boy called Sam who was diagnosed with nystagmus when he was three months old. At that first diagnosis, Vivien and her husband were told that Sam had a fifty per cent chance of “normal” school and it is this comment that left them both completely bewildered. In fact, this turned out to be a meaningless statement and although it took Vivien a long time to find out, most children with nystagmus go to a mainstream school.

For a young mum it was an increasingly difficult time which was not helped by the complete lack of information available for parents of a child with nystagmus. Today, we all take advantage of having immediate answers to questions via the internet, but back in 1983 this was not possible and they struggled to find much information on the condition.  Although there were umbrella charities which supported the visually impaired, such as the Royal National Institute of Blind People (RNIB), they had little to no information on nystagmus. This left Vivien to undertake her own research and she was able to identify that the London Refraction Hospital, now the Institute of Optometry was taking a lot of interest in nystagmus. Ron Mallett, who was the leading ophthalmologist at the London Refraction Hospital was undertaking a research project in the condition and Vivien was able to take Sam along to meet the team.  During the meeting it became clear that there was a need for a group which provided information about nystagmus to families, provided support and gave them the opportunity to meet. Together with Ron, Vivien set up this small group for people affected by nystagmus and they called themselves the Nystagmus Action Group (NAG). Its first meeting was held in 1984 and they quickly achieved media coverage which led to more people from around the UK joining the group.

Letters arrived from families who were as bewildered and distressed by the diagnosis and lack of support as Vivien had been. There were also letters from those with the condition who felt their needs had always been ignored. Answering those letters and signing up members became the central focus of the group and Vivien remembers how she used to sit up late into the night answering letters, and creeping out into the darkness to post the replies at the postbox on the corner of her road. There was a huge unmet need for support, and membership rapidly grew. Through the group, they also started to produce leaflets, including a guide for people with nystagmus and a school form for parents to give to teachers who had a child with nystagmus in their class.

The group renamed themselves the Nystagmus Network to reflect its UK wide membership network. After registering with the Charity Commission in 1990 the charity matured but has never forgotten its core values of offering support and information to those people affected by nystagmus.

The charity has achieved great things in the last thirty years. It hosts an Open Day once a year which brings together the nystagmus community (both families and researchers) and this has grown from a few families to over 180 people attending the Open day in 2016. The Nystagmus Network is also very prominent in the research into the condition and hosted the first International Research Meeting into nystagmus in 2005. Since then, there have been three subsequent meetings which have seen breakthroughs in understanding the condition and potential treatments for nystagmus. The charity also started “Wobbly Wednesday” in 2013. This is the international awareness day for nystagmus that has raised thousands of pounds and made nystagmus the topic of conversation for that day.

Today, the Nystagmus Network has a dedicated trust board who are committed to supporting the community. The charity went through a re-brand at the beginning of 2016 and is now embracing new technology to interact with its members and raise awareness of the condition. However, there is still a lot of work to be done so that nystagmus is no longer seen as an obscure condition but that it is a relatively common condition that impacts 1 in 500 people. Until then, the Nystagmus Network will continue to raise awareness and provide support to the community.