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

#YouMadeItHappen – Delilah


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Delilah and her family offered the perfect story for our Jeans for Nystagmus Genes Day campaign, helping us raise awareness of nystagmus as a genetic disorder. Thank you, Delilah You can read Delilah’s … Continue reading #YouMadeItHappen – Delilah

#YouMadeItHappen – Roger


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Roger inspired us to write a brand new guide to nystagmus – for adults. He generously shared his own thoughts on the subject to start us off and members of our community chipped … Continue reading #YouMadeItHappen – Roger

#YouMadeItHappen – Nadine


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Nadine decided she didn’t want her little daughter to grow up in a world where people didn’t know about nystagmus, so she wrote her book ‘Can I tell you about Nystagmus?’ which explains … Continue reading #YouMadeItHappen – Nadine

#YouMadeItHappen – Mike


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Mike is a professional benefits expert who also happens to have nystagmus. He is always ready with advice and guidance which he offers freely to Nystagmus Network members. He also writes our guide … Continue reading #YouMadeItHappen – Mike

#YouMadeItHappen – Patsy


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Patsy is one of our newest volunteers. It’s thanks to her that we were able to start up our virtual support group for people diagnosed with Acquired Nystagmus. Living with AN herself, Patsy … Continue reading #YouMadeItHappen – Patsy