A winter warmer for darker days


We’re taking part in the #TheGreatGetTogether – please join us We are hosting two online get togethers this month. For people living with Acquired Nystagmus our online get together takes place on Wednesday 18 January from 5pm. For people living with Congenital Nystagmus our online get together is on Thursday 19 January from 7pm. Please … Continue reading A winter warmer for darker days

Carol’s nystagmus story


We know you will enjoy reading about Carol’s experiences. She thinks of her nystagmus as a quirky trait that doesn’t define who she is and hopes you will find her story encouraging. I have spent 60+ years thinking this was just a funny and rather unique aspect of being me. I was born in early … Continue reading Carol’s nystagmus story

Leicester optician puts nystagmus in Focus


Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry.  Now, aged 21, and assistant manager at Specsavers Leicester, … Continue reading Leicester optician puts nystagmus in Focus

The impact of glare on reading


Researchers are investigating the impact of glare on young children with albinism and nystagmus to help ease important day-to-day tasks like reading. Jointly funded by Nystagmus Network and Fight for Sight, a team of researchers at the University of Leicester will be investigating glare in patients with infantile nystagmus.   People with nystagmus often experience glare, … Continue reading The impact of glare on reading

Perceptions of nystagmus and the impact of the Covid-19 pandemic


Impact of the COVID-19 pandemic on individuals with nystagmusand an exploration of public assumptions about the condition: an electronic questionnaire study The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by … Continue reading Perceptions of nystagmus and the impact of the Covid-19 pandemic

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


A guest post 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 … 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