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
Author: Sue Ricketts
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
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
Glaucoma Awareness Week 2022
The Nystagmus Network is marking Glaucoma Awareness Week 2022, the UK’s national week to raise awareness of glaucoma. The theme for this year is ‘Put your sight in the spotlight’, and we are supporting the initiative by encouraging everyone to have a regular sight test. Glaucoma is the name of a group of eye diseases … Continue reading Glaucoma Awareness Week 2022
Joint letter calls on health leaders to improve eye care for children and young people with learning disabilities
From the Visionary newsletter: SeeAbility’s Eye Care Champions have led the writing and submission of a letter to the Secretary of State for Health and Social Care and Chief Executive of NHS England with their easy read ‘manifesto’ for better eye care for people with learning disabilities. This submission has been supported by Visionary and over 80 … Continue reading Joint letter calls on health leaders to improve eye care for children and young people with learning disabilities