Your chance to influence the direction of UK nystagmus research NUKE is the Nystagmus UK Eye research group. Members are currently researchers, clinicians, academics and patient support groups, including, of course, the Nystagmus Network. Mission Statement NUKE brings together the leading clinical and scientific expertise, experience and resources across the UK. Supported by patient groups … Continue reading Next steps for NUKE
Category: Charity highlights
Nystagmus Champions of 2022
A Nystagmus Champion is someone who goes above and beyond to raise awareness of the condition, to raise funds or generally make life better for people living with nystagmus. The Nystagmus Champions of 2022, announced at our virtual Open Day on 1 October are: Lucy Mum to Maisie and partner to Myles, we’re sure it’s … Continue reading Nystagmus Champions of 2022
Leicester optician puts nystagmus in Focus
Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry. Now, aged 21, and assistant manager at Specsavers Leicester, … Continue reading Leicester optician puts nystagmus in Focus
Notice of the Nystagmus Network AGM
Following the announcement of a further national rail strike on Saturday 1 October, charity trustees have been obliged to take both Open Day and the AGM online. Notice is hereby amended that the Annual General Meeting (the “Meeting”) of THE NYSTAGMUS NETWORK (the “Charitable Incorporated Organisation or CIO”) will be held online on Saturday 1 October … Continue reading Notice of the Nystagmus Network AGM
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
Open Day 2022 – secure your ticket today!
Booking is now open for the Nystagmus Network Open Day on Saturday 1 October in Sheffield. In the historic grandeur of the Cutlers’ Hall, hear the latest thinking on nystagmus support, research and treatment, meet clinicians face to face and ask anything you like, seek one-to-one advice on education, employment or benefits, hear fabulous speakers … Continue reading Open Day 2022 – secure your ticket today!
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
A guest post 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 … Continue reading Nystagmus awareness at work