Nystagmus Network

The Nystagmus Network is a national, self help organisation and was established in 1984 to:

• Raise awareness of Nystagmus
• Provide information and support to people with nystagmus
• Promote research into nystagmus

The group has charitable status and is a registered UK charity, number 803440.

Our Aims

The first priority of the Nystagmus Network is to alleviate widespread unnecessary suffering among those affected by nystagmus. We do this through emotional support, practical help and good quality information. In the longer term the Nystagmus Network is also working to encourage research, in the hope that a treatment will be found and eventually a cure.

Central to our aims is information. Lack of information is a source of distress to parents of children with nystagmus as well as adult sufferers. Information given by professionals at the point of diagnosis is often poor or non-existent. Some sufferers are not even told that they have nystagmus. We work with ophthalmologists, orthoptists, optometrists, specialist teachers of the visually impaired (VI), social workers, VI organisations and other professionals to help them understand the problems presented by nystagmus and show them how they can be minimised.

We also work with individual sufferers and their families to remove the isolation, loneliness and despair they often feel. We enable people to learn from the experience of others how best to cope with this complex condition.

What we do

• Support - We provide emotional support and advice for people with nystagmus and their families (for example through our Insite Phone Service - see Contact & Join)
• Information - We provide good quality information in a variety of ways (for example through writing articles for journals, through an accessible Website, and by producing fact sheets on topics of interest to our members).
• Awareness - We publicise the existence of the Nystagmus Network, ensuring that newly diagnosed sufferers are informed of its existence. To provide continued support to our members as and when people need it. To raise awareness of nystagmus and its effects amongst the general public.
• Marketing - we promote and market the Nystagmus Network by attending exhibitions, meetings, conferences and talks.
• We link families in similar situations so they can share their experiences.
• Co-operation with other professionals - We work hard to build and maintain good relationships with others.
• Research -We encourage research into nystagmus.
• Financial Viability - We pursue funding applications on behalf of the Nystagmus Network to enable it to continue is vital work.
• Good Management - We ensure that the charity is managed professionally and efficiently. (for example by communicating mainly via email, by introducing Direct Debit and Gift Aid schemes).

Our Organisation

The Nystagmus Network is managed by a committee of 10 active members, each taking responsibility for certain areas of work such as database management, direct debit, gift aid, staffing the Helpline, encouraging interest in research and responding to enquiries.

The President, who originally established the charity, heads the Network. All the Committee members either have nystagmus or are parents of children with nystagmus. We are always looking for new members to join the committee to further the work that we do. We also need people to help with "one off" jobs, in which case it's not necessary that you join the committee. We are always looking for help and in the past we have looked for people with administrative skills, financial skills, writers, designers, IT experts and fundraisers. Please get in touch if you think that you are able to help us.

We have one part time member of staff, Paul White, who works for the Network. He staffs the office in Nottinghamshire three days per week. For many of you, Paul will be the first point of contact with the organisation. Paul provides information and support and responds to any enquiries that come into the office. Paul also promotes the work of the network by attending meetings, conferences, exhibitions and giving talks about the work that we do. Please telephone, email or write to Paul if you would like further details about the services we provide.

From Our Founder - Vivien Jones

I had never heard the word nystagmus until my first child was born in 1983. Sam was around 15 weeks old when we noticed small, jerky eye movements. Nearly two years later, after a long and tortuous journey towards a full diagnosis, we understood that Sam had a condition called cone dysfunction - literally, the cones of the eyes do not work properly. Nystagmus and acute light sensitivity are the main presenting symptoms.

It was Ron Mallett of the Institute of Ophthalmology in London who said to me one day how useful it would be if those with nystagmus, and their families, joined together to help each other, to exchange knowledge - and to support research. He gave me some addresses, and I wrote wondering what on earth would happen. By the end of 1984, a group of us had started to meet. The concept of "self-help groups" was fairly new then, and I remember our discussions about what we should actually do. I always felt the group survived us - we learned everything through our mistakes. We held an annual meeting and the creche was so chaotic, the children invaded the main session! But nothing ever really dented the enthusiasm. If ever I was feeling fed up, someone was feeling strong and that, to me, has been the story of the NN - people picking up the challenge and giving their time and energy. The group has always attracted wonderful people, and we grew.

From the moment I met other people with nystagmus, my own life was changed. For a start, I understood that Sam and we, his family, were not alone at all. People with nystagmus grew up and got on with their lives like everyone else. Of course we have worried about Sam, but he is 18 now (2001) and a fine young man. I think the Network shows what human beings can achieve when they come together to help each other, and I believe we should strive towards raising money for research. One day we will find a cure.

My husband Ian and I have another son, Max, who is 15 (2001). He did not inherit the eye condition that Sam has.