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

Next steps for NUKE


Your chance to influence the direction of UK nystagmus research NUKE is the Nystagmus UK Eye research group. Members are currently researchers, clinicians, academics and patient support groups, including, of course, the Nystagmus Network. Mission Statement NUKE brings together the leading clinical and scientific expertise, experience and resources across the UK. Supported by patient groups … Continue reading Next steps for NUKE

Nystagmus Champions of 2022


A Nystagmus Champion is someone who goes above and beyond to raise awareness of the condition, to raise funds or generally make life better for people living with nystagmus. The Nystagmus Champions of 2022, announced at our virtual Open Day on 1 October are: Lucy Mum to Maisie and partner to Myles, we’re sure it’s … Continue reading Nystagmus Champions of 2022

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

New research explores parental experience of their child’s diagnosis


What is the psychological impact on parents immediately following a child’s diagnosis of congenital sensory impairment? Rebecca Greenhalgh, Trainee Clinical Psychologist at Coventry University is leading a new research project, funded by Coventry University, School of Psychological, Social and Behavioural Sciences, designed to gain a better understanding of parents’ experiences immediately following their child’s diagnosis … Continue reading New research explores parental experience of their child’s diagnosis

Notice of the Nystagmus Network AGM


Following the announcement of a further national rail strike on Saturday 1 October, charity trustees have been obliged to take both Open Day and the AGM online. Notice is hereby amended that the Annual General Meeting (the “Meeting”) of THE NYSTAGMUS NETWORK (the “Charitable Incorporated Organisation or CIO”) will be held online on Saturday 1 October … Continue reading Notice of the Nystagmus Network AGM

Nystagmus Network invests £17,000 in research


Nystagmus Network trustees donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal last December thanks to the generosity of our fundraisers and supporters. Someone who contributed more than most is Southampton-born Mike Larcombe who, in 2020 completed his Walk for Wiggly Eyes, a three and a half month long … Continue reading Nystagmus Network invests £17,000 in research

Meet me in Southampton


This August the Nystagmus Network was finally able to meet with and celebrate the incredible achievements of a true nystagmus superhero, Mike Larcombe. From December 2019 and for a total of three and a half months, Mike walked the entire length of New Zealand (yes! the North and the South Island!) following the Te Araroa … Continue reading Meet me in Southampton

Open Day 2022 – secure your ticket today!


Booking is now open for the Nystagmus Network Open Day on Saturday 1 October in Sheffield. In the historic grandeur of the Cutlers’ Hall, hear the latest thinking on nystagmus support, research and treatment, meet clinicians face to face and ask anything you like, seek one-to-one advice on education, employment or benefits, hear fabulous speakers … Continue reading Open Day 2022 – secure your ticket today!

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