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

Wilson’s winning window


We are delighted to announce that 16 year old Wilson is the winner of our Nystagmus Awareness Day photography competition: The View from my Window. Wilson is very pleased to have won a competition he didn’t even know he’d entered. Each evening Wilson sends home to his Mum a photograph of the view from his … Continue reading Wilson’s winning window

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

Homeschooling and nystagmus


A Guest Post by author and nystagmus Mum, Nadine Neckles So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’. COVID-19 has changed a lot of what we do and how we do it, including how and where … Continue reading Homeschooling and nystagmus

Nystagmus in lockdown


In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person. I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told. Basically, I’m extremely short sighted and on a good day (with … Continue reading Nystagmus in lockdown

Nystagmus Awareness Day 20 June 20


Nystagmus Awareness Day – 20 June 2020 It’s national and international Nystagmus Awareness Day on Saturday 20 June 2020. We may all be staying at home this year, but we can still mark the day and raise awareness to ensure that the 1 in 1,000 adults and children living with nystagmus enjoys a greater understanding … Continue reading Nystagmus Awareness Day 20 June 20

Nystagmus is … a guide for adults


A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline … Continue reading Nystagmus is … a guide for adults

A YouGov nystagmus awareness survey


The Nystagmus Network commissioned a YouGov survey in May 2020, ahead of Nystagmus Awareness Day on 20 June, to see how aware the UK population is of nystagmus. The survey was free of charge, thanks to a competition, run by the Small Charities Coalition of which we are a member. The headline results 82% of … Continue reading A YouGov nystagmus awareness survey

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