Volunteers needed


It’s thought that some types of nystagmus are caused by a genetic spelling mistake. Although nystagmus is not classified officially as a rare disease, we can all take part in genetic research to help researchers find out more. The NIHR BioResource – Rare Diseases has been established to identify genetic causes of rare diseases, improve … Continue reading Volunteers needed

Improving the infantile nystagmus test


Delegates at 100% Optical learned about progress on refining the way an eye movement disorder is identified in babies Professor Jon Erichsen from the University of Cardiff gave a presentation on infantile nystagmus to eye care professionals at the recent 100% Optical event (ExCeL London, 25–27 January).   Professor Erichsen highlighted that in the condition there … Continue reading Improving the infantile nystagmus test

Alison joins the Nystagmus Network


We are delighted to announce that Professor Alison Leary MBE has joined the Nystagmus Network as a trustee. After spending 10 years in science Prof. Leary undertook an RN diploma at The Nightingale School at St Thomas Hospital (now Kings College London). She attained a Masters in Biomedical Science (Haematology) and worked in acute Haematology … Continue reading Alison joins the Nystagmus Network

Nystagmus researchers need your help


Common misconceptions about nystagmus A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond. They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both … Continue reading Nystagmus researchers need your help

Join us at the Manchester meet up


The next meeting of our north west regional Nystagmus Network support group is on Saturday, 25 April from 1 to 3pm in central Manchester Adults with nystagmus, parents of children with nystagmus and anyone supporting someone with nystagmus are all welcome to come along. The meeting is hosted by Nystagmus Network trustee, Marie Turnbull (pictured). … Continue reading Join us at the Manchester meet up

Fight for Sight survey on eye conditions and sight loss


Fight for Sight needs your help as part of a ground-breaking survey into the experience of living with sight loss or an eye condition. By taking part in the survey you will be helping Fight for Sight to put sight loss on the map and help increase the amount of money going into eye research. … Continue reading Fight for Sight survey on eye conditions and sight loss

How well will my child see?


Researchers from the University of Leicester have identified a new way of predicting the future vision of children with infantile nystagmus. The research, published in the journal Ophthalmology has developed a grading system for retinal development in infants and young children with the condition, providing an important tool for ophthalmologists to determine their future vision. … Continue reading How well will my child see?

Funding research into blindness


Please listen to the ‘In Touch’ programme on BBC Radio 4 to catch Head of Research at Fight for Sight, Dr Rubina Ahmed and Professor Chris Hammond talking about the launch of their new 2020 campaign. During the show, they’ll discuss the ‘1 to 20’ funding gap – only 1% of public funding is dedicated … Continue reading Funding research into blindness

Our New Year resolutions


… and our promises to you, the nystagmus community Thanks to your support and generosity throughout 2019, the Nystagmus Network can confidently resolve and promise that in 2020 we will ONE – provide even more support and information for everyone living with CN or AN, their friends and family and the people helping them to … Continue reading Our New Year resolutions

Take part in sight services research


You can take part in a new study of services for people with impaired vision. Commissioned by major sight loss charities, the research aims to drive improvements to services. Phone interviews last 40 minutes and anyone anywhere in the UK can take part. Participants will receive £30 as a thank you. Please click here to … Continue reading Take part in sight services research