The leading patient information, support and scientific research charity for nystagmus in Europe

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).

Among our medical and scientific advisers are the leading UK based nystagmus researchers Professor Irene Gottlob and Professor Chris Harris. And through the two international research workshops we’ve organised and funded (with help from the RNIB and Guide Dogs) we’ve made good friends with experts in Australia, Germany, India, the Netherlands, Slovenia and the USA.

Finally our patrons are Premier League footballer Steven Reid and international flautist Sir James Galway, OBE. Steven’s connection with nystagmus is that his son Harry has the condition. Sir James has twinkly eyes too, but has never let nystagmus stand in the way of his highly successful international career in music.

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.

Hope and support -- What does being NN Information and Development Manger involve? I'm NN's only employee, so it's varied. I answer questions by email, phone and letter. Many people want support - just knowing they're not alone with nystagmus makes a big difference. Parents ask what the future holds for their children. Some questions are specific - about DLA (Disability Living Allowance), education, the best hospitals, research, driving, employment or education.

"GVIS (Gwent Visual Impairment Service) arranged for John Sanders to give us a talk on Nystagmus - that was so useful. I thought I was fairly bright with 3 degrees but honestly John puts me to shame he has accomplished so much he really is an inspiration. Keep positive things I'm sure will get better." - from the NN forum April 2010.

Knowing what it's like-- But it's not just parents and people with nystagmus who contact NN. We hear from professionals too. Teachers, social workers and healthcare staff all want to know what it's like to have nystagmus and how to help students, clients and patients. So, another part of my job is giving talks and lectures.

"The more we work with nystagmus children, we realise the more information we get the better we will be. They still come out with things that stop us totally in our tracks." - VI support teacher.

Written word-- As a journalist by training, not surprisingly I'm responsible for our written information too. That includes this website, writing new material and keeping an eye on our online forum (insert link).

"We found your information pack very helpful- thank you very much for putting together such an informative pamphlet." - NN parent member.

Excellent back-up -- But don't think I do everything. NN has a fantastic committee and dedicated volunteers. Between them they run our database, membership, fundraising, finances, online shop and sales, media relations, research initiatives, corporate governance and organise events like our annual Open Day.

About Me

Observant granny-- I was more than a year old when doctors in Cornwall confirmed what my grandmother in Wales had noticed already. There was something wrong with my eyes and it was called nystagmus. My dad was in the RAF, so we moved around when I was a child and saw lots of eye doctors, even the Queen's ophthalmologist in Edinburgh. But in the 1960s the medics had only a sketchy understanding of nystagmus.

Memorable day-- By the 1980s I had a degree from Liverpool Polytechnic and was working as a translator in London. One summer evening, I went south of the river and for the first time talked to others with nystagmus. The occasion was an early meeting of the Nystagmus Action Group (NAG) - which later became the Nystagmus Network. It remains one of the most memorable days of my life.

Fine tradition-- NN has come a long way since then and so have I - despite not being able to drive. I've travelled around Europe, worked as a journalist and returned to Wales. In 2009, the committee appointed me Information and Development Manager - the fourth person to hold the post after Claire Entwistle, Helen Connor and Paul White.

Like Claire, Helen and Paul before me, I'm here to help, so do get in touch by email or phone. I work part time for NN, so leave a message if you don't get a reply immediately and I'll call you back.

Tel: either 0845 634 2630 or 029 2045 4242 (whichever number is cheaper for you).
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