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

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

Nystagmus isn’t catching – tell your friends!


The little girl in the picture has nystagmus. She is enjoying some drawing at a Nystagmus Network event some years ago. At the time she had just started school and thought it would help children like her if people understood nystagmus better. One of the first things she wanted other children to know was that … Continue reading Nystagmus isn’t catching – tell your friends!

Trustee vacancies


Are you looking for a new opportunity to put your energy, time, skills and talent to good use? Do you have the passion to support the nystagmus community in all its diversity or lived experience of nystagmus or another form of visual impairment? If so, please consider becoming a trustee of the Nystagmus Network, a … Continue reading Trustee vacancies

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

Our £17,000 investment in research


Nystagmus Network trustees have donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal. The money will be used to purchase a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and 4x Cervical Range-of-Motion instruments (CROM) to measure head postures. Patients … Continue reading Our £17,000 investment in research