An interview with Joanne


Violinist, soprano, opera impresario and Nystagmus Network member, Joanne Roughton-Arnold chats with Nystagmus Network’s Sue on Saturday 3 October as part of the Nystagmus Network virtual Open Day 2020. Hear Joanne talk about her experiences of her childhood and offer inspiration to young people with nystagmus dreaming of a career in the performing arts. Register … Continue reading An interview with Joanne

Sam’s challenge of a lifetime


In June 2021 Sam will embark on the challenge of his lifetime as he cycles 500 miles in 8 days on the North Coast 500 Cycle Ride for the Nystagmus Network. But who is Sam? Find out all about Sam and his challenge at the Nystagmus Network virtual Open Day. Please register here to join … Continue reading Sam’s challenge of a lifetime

Night in with the Nystagmus Network


Virtual Open Day 2020, on Saturday 3 October, will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests.  This is a fabulous opportunity to meet, chat and network with nystagmus experts, guest speakers and presenters, supporters and members of the Nystagmus Network whilst enjoying a relaxed … Continue reading Night in with the Nystagmus Network

Want to run a virtual marathon for the Nystagmus Network? You can! Here’s how.


It’s still possible to run a marathon this year. You’ve been keeping fit during lockdown. Your training continued on your daily time outside. All the big runs are cancelled, but … you can still run – on a virtual track with Strava. Your run, how, where and when you want it – you can even … Continue reading Want to run a virtual marathon for the Nystagmus Network? You can! Here’s how.

BBC charity appeal raises £8,000


Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by … Continue reading BBC charity appeal raises £8,000

Richard Osman to voice Radio 4 appeal


The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal. The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July. Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity … Continue reading Richard Osman to voice Radio 4 appeal

How amazing are you?


In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories. Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard … Continue reading How amazing are you?

Our wobbly photography competition – judged by David Katz


We want to raise as much awareness of nystagmus as possible this year and make sure that everyone has a chance to take part, so we’re running our wobbly photography competition: The View From My Window We know that lots of people who have nystagmus are also keen photographers. Most notably, of course, is internationally acclaimed … Continue reading Our wobbly photography competition – judged by David Katz

Nystagmus Awareness Day 2020


We may all be staying at home, but we can still mark national and international Nystagmus Awareness Day. Here are just some of the ways you can get involved. How amazing are you? In the run up to Nystagmus Awareness Day 2020, we are once again asking you to share your amazing nystagmus success stories. Not only … Continue reading Nystagmus Awareness Day 2020

Mike’s a Nystagmus Super Hero


In case you haven’t heard yet, Southampton born, Mike Larcombe, who has CN, set off on his Walk for Wiggly Eyes on 16 December. Mike is walking the entire length of both islands of New Zealand to raise awareness of nystagmus and funding for nystagmus research. The Nystagmus Network is one of Mike’s 3 chosen beneficiary charities. The others … Continue reading Mike’s a Nystagmus Super Hero