This Nystagmus Awareness Day we’re asking you to share your story. You can share your nystagmus story here This is Sue’s story … My nystagmus story begins in 1991 when the daughter I’d always dreamt of having was born. She was perfect. Just imagine the shock when, 6 weeks later at baby clinic, a doctor … Continue reading Sue’s nystagmus story
Category: Nystagmus Awareness Day
John’s nystagmus story
This Nystagmus Awareness Day we’re asking people to share their story. You can share your story here John’s nystagmus story is a letter to his 9-year-old self To the best of my recollection, I was about eight or nine when I really began to worry about nystagmus. Most of all, I worried about what I … Continue reading John’s nystagmus story
Sharon’s nystagmus story
This Nystagmus Awareness Day we’re asking you to share your story. You can share your nystagmus story here This is Sharon’s story … My nystagmus story started October 2017 when my son was 10 weeks old. He just hadn’t seemed right all day, refusing to feed. I’d taken him to the GP. Fairly happy with … Continue reading Sharon’s nystagmus story
James’s nystagmus story
This Nystagmus Awareness Day we’re asking you to share your story. This is James’s story. You can share your story here Until my son Sullivan was born, we as a family had no idea what nystagmus was, that there was a charity called Nystagmus Network and a wonderful community available for support. We noticed within … Continue reading James’s nystagmus story
Sue at VIEW
Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs). Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms. Sue was part of … Continue reading Sue at VIEW
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
Volunteer for us!
The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey? If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like … Continue reading Volunteer for us!
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