Could you help us with Donorfy?


Volunteer Donorfy CRM Developer and Trainer What will you be doing? What are we looking for? Experience and expertise in implementation of a CRM (preferably Donorfy) within a not for profit organisation. What difference will you make? Your expertise can help us develop this small charity with huge ambitions to move on to the next … Continue reading Could you help us with Donorfy?

#UKCharityWeek 2022


The Nystagmus Network is proud to be an official partner charity of #UKCharityWeek. Now in its 10th year, #UKCharityWeek is an annual celebration of charity and all about bringing people together across the sector. Stay tuned for the celebrations on 5 to 9 December.

Nystagmus Network invests £17,000 in research


Nystagmus Network trustees donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal last December thanks to the generosity of our fundraisers and supporters. Someone who contributed more than most is Southampton-born Mike Larcombe who, in 2020 completed his Walk for Wiggly Eyes, a three and a half month long … Continue reading Nystagmus Network invests £17,000 in research

Meet me in Southampton


This August the Nystagmus Network was finally able to meet with and celebrate the incredible achievements of a true nystagmus superhero, Mike Larcombe. From December 2019 and for a total of three and a half months, Mike walked the entire length of New Zealand (yes! the North and the South Island!) following the Te Araroa … Continue reading Meet me in Southampton

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

People’s perceptions of nystagmus and the impact of Covid-19


In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published. The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually … Continue reading People’s perceptions of nystagmus and the impact of Covid-19

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

What’s your nystagmus research question?


The Nystagmus Network has been investing in research since the 1990s. Nystagmus academics, clinicians and researchers in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton continue to focus on causes, effects, treatments and quality of life.   In the last 30 years we’ve seen huge advances in the sophistication of diagnostic techniques, with more widespread use of … Continue reading What’s your nystagmus research question?

Run the Royal Parks


The Royal Parks Half Marathon is a spectacular run through central London – the first and only one of its kind. The stunning 13.1 mile route takes in the capital’s world-famous landmarks on closed roads, and four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens. Stephen … Continue reading Run the Royal Parks