Could you help shape the direction of eye research in the UK?


Eye Research Priority Survey Your input is needed into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities* that were first published in 2013. Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions … Continue reading Could you help shape the direction of eye research in the UK?

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

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

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

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

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


Guest post by Ana Semrov, PhD student and study researcher, Vision and Eyes research team at UCL Childhood visual impairment can have a significant impact on a person across their whole life, affecting their social and educational outcomes, career prospects and quality of life. However, how individual children and their families adapt to living with a … Continue reading What shapes quality of life of visually impaired children and young people?

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

Congratulations, team Leicester


Leicester research team awarded prestigious prize from the Royal College of Ophthalmologists Image credit: Royal College of Ophthalmologists A team of specialist eye doctors at the University of Leicester have received a national award for their work, which will improve diagnosis and management for children with nystagmus. The study was jointly funded by the Nystagmus … Continue reading Congratulations, team Leicester

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