Joel’s nystagmus story


For Nystagmus Awareness Day 2022 we are delighted to share Joel’s nystagmus story, in his own words: What is nystagmus? Not many people know what nystagmus is. The best way to describe it is movement of the eye without the will of the mind. The condition is characterised by uncontrollable eye movements from side to … Continue reading Joel’s nystagmus story

Join us for the big lunch


As part of the long weekend 2-5 June, to celebrate the Platinum Jubilee of Her Majesty the Queen, the Nystagmus Network is inviting members of the nystagmus community to join us for our very own virtual big lunch. Let’s all get together! Whether you’re lunching at home in the garden, in your street or a … Continue reading Join us for the big lunch

Nystagmus Network funds research equipment


At the end of 2021 the Nystagmus Network invited funding applications from UK nystagmus researchers to cover the cost of equipment needed to take their work forward. This week work has begun at the University of Sheffield and Sheffield Hospital using newly funded equipment. Orthoptist, Gemma Arblaster, from the University of Sheffield applied for a … Continue reading Nystagmus Network funds research equipment

Nystagmus affects quality of life of children and their parents, confirms new research


A team at the Eye Hospital and School of Ophthalmology and Optometry at Wenzhou Medical University in China have recently published their research on the effects of childhood cataract surgery in young children. The results show that the impact of nystagmus, strabismus and amblyopia, resulting from the cataracts, not from the surgery, have a significant impact … Continue reading Nystagmus affects quality of life of children and their parents, confirms new research

Eye health experts seek to refresh eye research priorities


Eye experts across the UK are calling for your input 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 … Continue reading Eye health experts seek to refresh eye research priorities

BlindAmbition takes over the Working Age Forum


BlindAmbition is pleased to announce that it will be taking over the running of the Working Age Forum (WAF) for Visually Impaired People endorsed by the RNIB. The forum is a relaxed, sociable space for visually impaired people to meet, learn and inspire each other to achieve their best lives. The forum has been run … Continue reading BlindAmbition takes over the Working Age Forum

Care givers survey


Participants needed for research into the effects of the pandemic on those caring for and supporting people living with a visual impairment The Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London are looking for volunteers, aged 18 or over, who provide care and support to an individual living with … Continue reading Care givers survey

Does albinism protect against AMD?


We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism (OA, or OCA). Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a … Continue reading Does albinism protect against AMD?

A new guide to nystagmus and benefits


From our monthly virtual support networks to our free benefits advice, the Nystagmus Network is always here for you. As we emerge from the pandemic, we’re all feeling the financial pressure of increasing fuel prices, the rise in the cost of living and, for some, job insecurity. So, we’ve put together a new guide to benefits. Alongside our bespoke booklet on DLA, … Continue reading A new guide to nystagmus and benefits

We publish our Annual Report 2021


With two years of global pandemic behind us, the Nystagmus Network is still here, supporting the nystagmus community, thanks to the dedication of our valued supporters, fundraisers and members. Thanks to you, in 2021 we  ·       supported almost 600 people with enquiries, helping them to make sense of nystagmus ·        engaged with and provided … Continue reading We publish our Annual Report 2021