Parents and carers of children and young people with nystagmus are warmly invited to our first Parents’ Get Together of the year. We are delighted to share that Becky Hyams will be joining us as our special guest. Becky is a second year university student, studying Advertising and Digital Marketing. She has nystagmus herself. She … Continue reading Parents and carers get together
Category: Nystagmus heroes
Carol’s nystagmus story
We know you will enjoy reading about Carol’s experiences. She thinks of her nystagmus as a quirky trait that doesn’t define who she is and hopes you will find her story encouraging. I have spent 60+ years thinking this was just a funny and rather unique aspect of being me. I was born in early … Continue reading Carol’s nystagmus story
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
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
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