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.

Merry Christmas everyone!

Merry Christmas everyone!

It’s been a very busy year at the Nystagmus Network with lots taking place! Our Chairman Richard has a short Christmas message he would like to share with you all – please click on the image below or the link here to watch it.

Thank you for our support in 2016!

Finally, we would like to say a big thank you to everyone who has supported the charity in 2016. We have big plans for next year which we hope will make a massive impact on everyone in our community!

Have a great day and a very Merry Christmas from everyone at the Nystagmus Network!

Steve McKay announcement

It is with great sadness that we announce the sudden and unexpected death of Trustee Steve McKay from Newton Abbot in Devon.  Steve suffered a tragic road accident on Thursday 1 December which rendered him unconscious and he never recovered, passing away on Sunday 4 December.  Steve has been a highly-valued Trustee with the Nystagmus Network since 2009 and was responsible for our public relations and social media engagement.

He has made a huge contribution to the charity with his commitment and dedication and his seemingly boundless enthusiasm. At many of our Open Days Steve would astound everyone with his stories of daring escapades in the west country, including driving tractors and having a good go at a range of sports. He was a role model in never letting nystagmus hold him back.  Most importantly for the nystagmus community, it was Steve who came up with the notion of “Wobbly Wednesday” and who saw the potential of an annual awareness day for nystagmus that mixed serious messaging with a strong element of fun and celebration.  He recently shared a video blog with everyone about his love of photography – another of his many talents.

The Trustees and staff of the Nystagmus Network and everyone in the wider nystagmus community will miss Steve very much and our thoughts are with his family at this time.  His inspiration and zest for life and his determination not to let his visual impairment get in his way will live on, especially as Wobbly Wednesday continues to grow year-on-year. Below is a short tribute video to Steve.

Steve’s funeral will be held on Wednesday 21st December at 11.15 at All Saints Church, Highweek, Newton Abbot, followed by refreshments at the Highweek Inn. Family flowers only with donations going to the Nystagmus Network, either by sending a cheque payable to “The Nystagmus Network” to Zealleys, Funeral Directors of 17 Devon Square, Newton Abbot, Devon. TQ12 2HR, or direct via our Just Giving page here.

No limits

This week the video blog at the Nystagmus Network features the amazing Josh!
Josh is a keen skier who loves to take part in ski competitions. However, he was once told that even though he has nystagmus, he’s not visually impaired enough to take part in disability races by the IPC. So, what did Josh do? Check out the video and find out….

Fundraising for the Nystagmus Network

Our latest video blog features an interview by our very own Sue with two of the charity’s fundraisers! Gavin and Paula Birch recently held a fun day and football match for the Nystagmus Network where they were able to raise funds and awareness of the condition. Their daughter Freya was diagnosed with nystagmus when she was eight weeks old and they want to help the charity and other families in any way they can.

Everyone at the charity would like to say a big thank you to Paula and Gavin and if you would like to make a donation to their event you can do so here

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!