Nystagmus, the way we see it

If you’ve ever wondered how a person with nystagmus sees or how the condition affects their sight, listen to Richard, Harriet and Will explain in our video.

You can show our video to anyone or use it, completely free of charge, for training purposes. All we ask is that you let us know.

Nystagmus, the way we see it – watch here.

Become a member of the Nystagmus Network

As a small charity, the Nystagmus Network relies heavily on regular income from membership subscriptions. Over the years our membership has steadily grown and at the same time the cost of subscriptions has remained fairly static. This means that we are supporting an ever growing nystagmus community on a fairly modest income.

To find out more about our membership please check out the video below which features our Chairman Richard Wilson talking about how membership has a big impact on the work we can do at the charity.

We are not planning any increases in our subscriptions

It is important to us to keep membership affordable for everyone, regardless of income, so that they can all enjoy the benefits. What we are trying to do, however, is streamline things a little so that we can be sure of a steady stream of funds to enable us to continue our vital work, supporting those affected by nystagmus and their families, providing information to schools and other professionals, raising awareness of the condition and fostering research into diagnostics and potential therapies.

Having said that, building our membership is important to us in far more significant ways than simply the income it brings. The more people we represent who are affected by nystagmus, or have an interest in the condition, the better able the charity will be to influence real change. Being able to evidence that we represent a large body of nystagmus stakeholders will allow us to be a major player in serious scientific and medical research programmes both in the UK and internationally. It will allow us to apply for major grants to develop our own projects, stage conferences and hold events for families and groups of young people and adults, to help dispel the isolation suffered by those, in particular, affected by acquired nystagmus.

If you are already a member of the Nystagmus Network, even if your subscriptions may have lapsed, we will be writing to you shortly to explain to you how you can help us by paying your subscription in one of two ways.

The first is by paying for a yearly membership via Shopify which costs £20.

The second option is by setting up a monthly payment via Justgiving where you can decide how much you would like to pay.

Nystagmus Network membership benefits

And what are the benefits to you as a fully paid up member of the Nystagmus Network?

You have full access to all our downloadable documents for parents, adults and teachers as well as information on benefits via our website here.

You can call on our peer-to-peer support service at any time which means that a member of our trained volunteer team will be at the end of the phone or an email to offer a friendly ear.

You can take advantage of a free place at our annual Open Day, where you can meet up with others affected by nystagmus and hear all the latest news from leading nystagmus experts.

You will continue to enjoy our fortnightly newsletter, Focus, which will drop straight into your email inbox.  We welcome contributions from members.  So if you have a nystagmus story you’d like to share, please let us know. You can email us at [email protected].

Finally, you will know that as a Nystagmus Network member you are part of a growing body of people shaping the future of nystagmus support, awareness and research.

Thank you again for joining us and please know that your membership is valued.

Sue’s journey at the Nystagmus Network

Our second video blog has been recorded by Sue Ricketts. Sue has been involved with the Nystagmus Network for many years and joined the charity as the Communication and Development Manager in 2015.

In the vide Sue talks about her involvement with the charity and how she has seen it grow in strength over the last twenty years!

Remember to keep checking back for the latest post!