Nystagmus in Down Syndrome – a Retrospective Notes Review


Nystagmus has been reported in up to 30% of people with Down Syndrome (DS), and yet is still not well understood. This study, by a team at Moorfields Eye Hospital, aims to characterise the clinical features of patients with DS and nystagmus. It is recently published in the British and Irish Orthoptic Journal (BIOJ). The … Continue reading Nystagmus in Down Syndrome – a Retrospective Notes Review

Volunteer for us!


The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey? If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like … Continue reading Volunteer for us!

Nystagmus awareness at work


After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate. It was a positive move and I get lots of support and adaptations at … Continue reading Nystagmus awareness at work

It’s so nice to be appreciated


In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation. … Continue reading It’s so nice to be appreciated

Hanni’s nystagmus story


Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words: When I was diagnosed with nystagmus in … Continue reading Hanni’s nystagmus story

Tim Hands – living with nystagmus


Tim has a whole clutch of awards for his work. He says: I ain’t done bad for a lad that can’t see too well. This is Tim’s amazing nystagmus story or watch his video I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to … Continue reading Tim Hands – living with nystagmus

Living with nystagmus through a global pandemic


Learning to live with nystagmus, finding our way in the world and developing independence creates a range of challenges as we move through the stages of life. Whether we’re talking about an everyday experience or the bigger and more stressful events we face, we all need a certain amount of resilience. There’s a balance to … Continue reading Living with nystagmus through a global pandemic

What shapes quality of life of visually impaired children and young people?


Guest post by Ana Semrov, UCL GOS Institute of Child Health We are looking for volunteers to take part in our study called: What shapes quality of life of visually impaired children and young people. What is the study about? We aim to find out what helps children and young people with visual impairment and … Continue reading What shapes quality of life of visually impaired children and young people?

Nystagmus isn’t catching – tell your friends!


The little girl in the picture has nystagmus. She is enjoying some drawing at a Nystagmus Network event some years ago. At the time she had just started school and thought it would help children like her if people understood nystagmus better. One of the first things she wanted other children to know was that … Continue reading Nystagmus isn’t catching – tell your friends!

People’s perceptions of nystagmus and the impact of Covid-19


In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published. The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually … Continue reading People’s perceptions of nystagmus and the impact of Covid-19