We have lots of information on our public website, but you’ll find even more in the members’ area including back copies of our Focus newsletter. This 16 page newsletter comes out four times a year and is full of articles on research, practical advice and – perhaps most important of all – first-hand accounts from people with nystagmus and from parents of children who have nystagmus.
Feedback about back issues of Focus on the members’ area:
"I’m working my way through the back list of Focus – it’s excellent."
On top of that you can read about nystagmus and driving – one of the subjects we’re asked about most often – nystagmus and employment, diagnostic tests, research and treatment. You can find out how common nystagmus is and why you will see different prevalence figures. You can read about the history of the Nystagmus Network and about some of the key players in the world of research and treatment. Here, for example, is the start of the first item on diagnostic tests:
“What we aim to do in this article is look at what tests are carried out to help get a diagnosis for congenital nystagmus, the reasons for doing them and what they involve. Not everyone will need any or all of these tests. Equally, just because you or your child is sent for a test or a scan does not mean you should be concerned.
Doctors and researchers have made a lot of progress in diagnosing congenital nystagmus in the last 30 years, but finding the cause of each individual case of congenital nystagmus remains a challenge. Accurate diagnosis relies on a combination of experienced staff and hi-tech equipment.
Despite the progress, there are still quite a few people like me where no-one is sure what the cause is. In medical terminology, we’re described as having “idiopathic nystagmus”, which is a fancy way of saying “we don’t know what the cause is.”
The above article and others explain VEPs, ERGs, CT and MRI scans as well as OCT in the context of nystagmus. This is just a small example of the kind of extra information available to NN members. And we’re regularly adding to this part of the website.
Some of you might wonder why we have a membership system. Why don’t we just make all our services and information free and available to everyone? Well, there are several reasons why we’ve always had a membership structure, right from when we started in 1984.
- • Membership gives us clout. We represent you. Vision scientists, ophthalmologists and other medical staff, teachers, government organisations and other charities listen to us because we have members and represent the majority view of people affected by nystagmus.
- • The income from membership subscriptions helps us fund research into nystagmus. The Nystagmus Network has puts tens of thousands of pounds into research – more than any other charity in the world. We have funded two international research workshops, eye tracking equipment, an OCT scanner, genetic research and many other projects over the years.
- • The income from membership subscriptions enables us to give you information and support. It helps fund this website and our telephone and email helpline. It subsidises our Open Days and awareness raising. It means we can send speakers to conferences and explain to doctors, teachers and others what it’s like to have nystagmus. And subscription income funds our publications and our ability to develop more and better resources in the future.
The Nystagmus Network does not receive any government funding. For income we rely on membership subscriptions, donations and fundraising. Put simply, if it wasn’t for the thousands of people who have joined and generously supported NN in the past, you wouldn’t be reading this now.
When you join the Nystagmus Network, you receive:
- • a membership pack
- • the newsletter four times a year
- • discounts on our publications
- • a discount on entry to our annual open day
- • access to the members’ area of this website
Other benefits include:
- • information about nystagmus from people who have the condition
- • hearing about the latest research -- and taking part if you want
- • information on education, employment and benefits
- • answers to your questions -- whether about treatment, research, driving, education, employment or anything else to do with nystagmus
- • emotional and practical support
- • easier access to others affected by nystagmus
- • belonging to a community that understands nystagmus
- • being listened to
On top of that you're:
- • supporting research
- • raising awareness of nystagmus
- • supporting our email and phone support service
- • helping to maintain all the activity you see here
Although we’re a UK based charity (that means we’re a not for profit organisation and we’re supervised by the UK Charity Commission), we have members around the world. So we welcome members from outside the UK. If you have any questions about membership, please email