Blog – Page 3 – Nystagmus Network

Flynn is smiling for the camera and is wearing glasses. He is standing in front of lots of greenery.

Flynn’s Story

This is Flynn. Flynn was diagnosed with congenital nystagmus at the age of 2. When Flynn was about 6 months old, our health visitor noticed something was not quite right. … Continue reading Flynn’s Story

Jan is smiling for the camera, wearing glasses, a pink blouse and a patterned scarf

Jan’s 1984 Story

I grew up knowing I was short-sighted but, other than that, I had a pretty normal childhood in a family with five brothers and two sisters. In school, I sat at the … Continue reading Jan’s 1984 Story

Marsha wears a floral top and a denim jacket. She is standing in a garden by a hedge.

Marsha’s message for Nystagmus Awareness Day 2024

Thank you to Marsha de Cordova for taking a few moments out of her busy schedule to celebrate with us Nystagmus Awareness Day 2024 in our Ruby Year. Watch Marsha’s … Continue reading Marsha’s message for Nystagmus Awareness Day 2024

Drew is wearing glasses and is smiling for the camera holding a steering wheel. In the background there is a rally car.

Drew’s Story

My name is Drew. Some may know me as DrewpyDesigns. I was born with albinism and nystagmus, but that’s not my full story. I’m a three-time TTT champion, self-employed as … Continue reading Drew’s Story

Taylan is wearing a smart suit with a striped tie. He is smiling for the camera and standing outside in an open space.

Taylan’s Story

My name is Taylan. I’m 8 years old and I’m nearly 9. My mummy was really worried when she found out I had nystagmus. I have lots of hobbies and … Continue reading Taylan’s Story

Angela is wearing glasses and is smiling for the camera. There is text embedded into the photo that says 'Happy Nystagmus Awareness Day We all have our own story'.

Angela’s Story

I am in my 50s and in my generation, there was little awareness or support for people with nystagmus or their parents. Growing up, I was always a clumsy child … Continue reading Angela’s Story

It’s nearly Nystagmus Awareness Day 2024

Make sure you’re ready to take part in Nystagmus Awareness Day 2024 on 20 June. Your FREE digital programme has all the information and links you need. There’s the great … Continue reading It’s nearly Nystagmus Awareness Day 2024

Calling people living with nystagmus in Scotland who are over 65

Are you an older adult living with visual impairment? We are a team of researchers at the University of Strathclyde who want to explore your experiences of travelling from home … Continue reading Calling people living with nystagmus in Scotland who are over 65

Take part in research at Charing Cross Hospital, London

Sarah Hösli, Honorary Senior Research Fellow with the Brain and Vestibular Group at Imperial College London, part of Dr Barry Seemungal’s team, invites study participants. She writes: “We are currently … Continue reading Take part in research at Charing Cross Hospital, London

A child wearing glasses is holding up a poster she has made.

Nystagmus Network trustees publish their annual report for 2023

Through 2023 the charity has gone from strength to strength in delivering support, funding research, and raising awareness. As we enter our Ruby anniversary year trustees would like to thank again … Continue reading Nystagmus Network trustees publish their annual report for 2023