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Who We Are

The Nystagmus Network s a UK charity run by individuals and families affected by the eye condition nystagmus. We have three employees - Executive Information and Development Manager Daniel Lewi, Communication and Development Officer Sue Ricketts and Information Officer Kerry Pleasant. Dan, Sue and Kerry all work from home, so our overheads are very low. They are supported by volunteers and committee members. The committee chair is Richard Wilson and our president is Vivien Jones. The Nystagmus Network was established in 1984 and is a registered UK charity (number 803440).

 

 

Daniel is the main point of contact for the Nystagmus Network.  Contact him on This email address is being protected from spambots. You need JavaScript enabled to view it. or on 0345 634 2630.  You will also find him on Facebook and Twitter along with Steve (our volunteer Press Officer) Sue and Kerry .  

Image of Kerry Pleasant

 

Kerry, whose son Oliver has nystagmus, manages our online shop. You can contact Kerry at This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

 

 

 

Sue, whose grown up daughter has congenital nystagmus, was previously a Nystagmus Network Trustee and volunteer parent adviser.  She is mainly responsible for fundraising, Wobbly Wednesday activities and publications such as Focus, our newsletter.  You can contact Sue at This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

We are always looking for volunteers to help us do more and keep the Nystagmus Network vibrant. Contact Dan ( This email address is being protected from spambots. You need JavaScript enabled to view it. ) to find out more.

Who We Work With

We work with ophthalmologists, orthoptists, optometrists (we were BCLA charity of the year 2009/2010), specialist teachers of the visually impaired, social Image of a team of professionals with Nystagmus literatureworkers, 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).

Our Advisers And Patrons

Among our medical and scientific advisers are the leading UK based nystagmus researchers Professor Jon Erichsen, Professor Irene Gottlob, Professor Chris Harris and ophthalmologist Mr Jay Self. For a full list see http://www.nystagmusnet.org/cms/index.php/research/scientific-and-medical-advisers

Through the three international research workshops we’ve organised and funded (with help from the RNIB and Guide Dogs for the first second one in 2009) we’ve made good friends with experts in Australia, Germany, India, the Netherlands, Switzerland, 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.

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.

John Sanders, former Nystagmus Network Information And Development Manager

What did being the Nystagmus Network Information and Development Manger involve? I answered questions by email, phone and letter. Many people wanted support.  Just knowing they were not alone made a big difference.

"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."

But it's not just parents and people with nystagmus who contact the Nystagmus Network. Teachers, social workers and healthcare professionals 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 was 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.

As a journalist by training, not surprisingly I was responsible for our written information too. That includes this website and Nystyagmus Network publications.

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

But don't think I did everything. The Nystagmus Network 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.

To contact the current Nystagmus Network support team email This email address is being protected from spambots. You need JavaScript enabled to view it. or call 0345 6342630.