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

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

Nystagmus awareness at work


After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate. It was a positive move and I get lots of support and adaptations at … Continue reading Nystagmus awareness at work

It’s so nice to be appreciated


In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation. … Continue reading It’s so nice to be appreciated

Hanni’s nystagmus story


Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words: When I was diagnosed with nystagmus in … Continue reading Hanni’s nystagmus story

Thank you, Harshal


The Nystagmus Network’s newest trustee, Dr Harshal Kubavat has a young child with nystagmus. Like many parents, he had never heard of nystagmus before. After supporting the charity’s work in the research space as a volunteer for some time, Harsh joined us as a trustee in November 2021. He is now a stalwart of the … Continue reading Thank you, Harshal

Thank you, Vivien


Vivien Jones is the Founder and Honorary President of the Nystagmus Network. She started the charity in 1984 to support parents like her. Her son, Sam had recently been diagnosed with nystagmus. She could find no information about the condition and resolved to change that. Watch the story of the Nystagmus Network on video here … Continue reading Thank you, Vivien

Charlie’s Nystagmus Network football team


Charlie loves football. He also loves his team. When they were short of money to pay for the under 7s new kit, Charlie had the brilliant idea of asking the local bank. Banks have lots of money, don’t they? Charlie’s letter arrived on Luke’s desk and then Luke also had a brilliant idea. He decided … Continue reading Charlie’s Nystagmus Network football team

Tim Hands – living with nystagmus


Tim has a whole clutch of awards for his work. He says: I ain’t done bad for a lad that can’t see too well. This is Tim’s amazing nystagmus story or watch his video I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to … Continue reading Tim Hands – living with nystagmus

Living with nystagmus through a global pandemic


Learning to live with nystagmus, finding our way in the world and developing independence creates a range of challenges as we move through the stages of life. Whether we’re talking about an everyday experience or the bigger and more stressful events we face, we all need a certain amount of resilience. There’s a balance to … Continue reading Living with nystagmus through a global pandemic