Applications are now invited for a PhD Studentship to undertake clinical research to address visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments. Click here for details and to apply The award is jointly funded by the Nystagmus Network and Fight for Sight.
When my daughter was 6 weeks old a paediatrician at baby clinic told me she was blind. Just like that. No preamble. It was a devastating experience, a cruel message, bluntly delivered. I went to see my GP, whom I knew well and trusted. She confirmed what I already suspected. My daughter wasn’t blind, but … Continue reading 30 years of nystagmus research – what a difference it has made
An update of our post doctoral award For those of you eagerly awaiting news, alongside charity trustees, of the outcome of 2019/2020 applications for the new post doctoral research project into nystagmus, jointly funded by the Nystagmus Network and Fight for Sight, we can now share with you the somewhat disappointing news that the project … Continue reading Nystagmus Network research investment 2020 – 2021
Can you believe that it’s THREE MONTHS TODAY since Mike set off on his crazy ‘wiggly walk’ the entire length of New Zealand to raise money for nystagmus research? And he’s still walking! In case you haven’t been following his progress that closely, he’s currently in the Auckland area and it’s all got a bit … Continue reading Looking good, Mike!
A team at Cardiff University is conducting a study to identify the factors that influence the decisions made by genetic counselling patients about proceeding with genetic tests. They are looking to recruit patients who are undergoing genetic testing or pre-natal testing to take part in the study by recording their thoughts and feelings as they go through the … Continue reading Research into decision making for genetic testing
Ifigeneia Manitsa BEd, MSc, AFHEA (pictured) is a Psychology Researcher at Kingston University London. Her research is about the social and academic inclusion of adolescents with and without visual impairments. Ifigeneia has a Degree in Primary Education and a Masters in Special Education. Visual impairment has been her field of expertise for the past 7 years. Her latest … Continue reading Parents of adolescents with nystagmus: research participation opportunity
Circadian Therapeutics are seeking vision-impaired individuals between 18 – 70 years to participate in a research project exploring experiences of sleep and daily rhythm disruption. In partnership with the Blind Veterans UK, Circadian Therapeutics is running a survey to identify sleep and circadian disruption experienced by vision impaired individuals in order to provide informed feedback … Continue reading Circadian Therapeutics Sleep Health Survey
As previously reported here, the Research Unit for Nystagmus at Cardiff University has been looking for people with nystagmus to take part in a survey that aimed to further their understanding of the number of people with nystagmus who have also been diagnosed with glaucoma. Nikita Thomas, of Cardiff’s School of Optometry and Vision Sciences … Continue reading Research on nystagmus and glaucoma
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
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