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
Tag: Nystagmus Awareness Day
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
Perceptions of nystagmus and the impact of the Covid-19 pandemic
Impact of the COVID-19 pandemic on individuals with nystagmusand an exploration of public assumptions about the condition: an electronic questionnaire study The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by … Continue reading Perceptions of nystagmus and the impact of the Covid-19 pandemic
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
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
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!