30 years of nystagmus research – what a difference it has made

When my daughter was 6 weeks old a paediatrician at baby clinic told me she was blind. Just like that. No preamble. It was a devastating experience, a cruel message, bluntly delivered. I went to see my GP, whom I knew well and trusted. She confirmed what I already suspected. My daughter wasn’t blind, but … Continue reading 30 years of nystagmus research – what a difference it has made

Does nystagmus or ocular albinism affect my immunity?

Lots of you are asking us this question and some of you have received notification letters from the government. We asked for expert clinical advice and received the following statement: “IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity. “There are some syndromic forms of albinism that are associated … Continue reading Does nystagmus or ocular albinism affect my immunity?

Julia’s musical adventures

A guest post. A couple of years ago, I wrote a piece about being a parent with nystagmus of a child without. That child is now old enough to tell me if an approaching bus is a three-and-a-four-and-a-one or a two-and-a-nine, and I consider myself to be winning at life. My second child appears to … Continue reading Julia’s musical adventures

Nystagmus researchers need your help

Common misconceptions about nystagmus A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond. They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both … Continue reading Nystagmus researchers need your help

Fight for Sight survey on eye conditions and sight loss

Fight for Sight needs your help as part of a ground-breaking survey into the experience of living with sight loss or an eye condition. By taking part in the survey you will be helping Fight for Sight to put sight loss on the map and help increase the amount of money going into eye research. … Continue reading Fight for Sight survey on eye conditions and sight loss

Are you going to LookFest 2020?

LookFest is an accessible family festival outdoors and under canvas for families where there are children and young people with impaired vision.After the huge success of LookFest 19, they’re doing it all over again in July 2020. Join them in the beautiful Herefordshire countryside for a fun-filled weekend with the #LookFamily See the highlights of last … Continue reading Are you going to LookFest 2020?

Reading an optician’s prescription

Although glasses cannot stop nystagmus they can correct refractive errors, such as long or short sight and astigmatism, to make the sight as clear as it can be. Do you understand what all the numbers and words actually mean on your prescription? Specsavers have made a handy video explaining everything. Watch here to find out … Continue reading Reading an optician’s prescription

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 … Continue reading Nystagmus, the way we see it

Nystagmus question on Fifteen to One

If you happened to be watching popular Channel 4 TV quiz show, Fifteen to One on Wednesday 19th December and were paying very close attention you will have heard a question about nystagmus. Quiz master, Sandi Toksvig asked “Which sensory organs are affected by the medical condition nystagmus?” The contestant clearly knew his stuff as … Continue reading Nystagmus question on Fifteen to One

Free run places

Would you like to take up a FREE run place for the Nystagmus Network? We have places in the London Vitality 10k on Monday 27 May (Bank Holiday Monday) and are about to purchase places in the Royal Parks Half Marathon on Sunday 13 October. Due to the relatively high cost of the places for a small charity like … Continue reading Free run places