One of our main objectives at the Nystagmus Network is to provide information and support to the nystagmus community. To achieve this we have been working hard reviewing all of our documents to make sure they are up to date, readily available and appeal to a wide audience. Not only have we have produced brand … Continue reading Check out our new nystagmus booklets!
Our second video blog has been recorded by Sue Ricketts. Sue has been involved with the Nystagmus Network for many years and joined the charity as the Communication and Development Manager in 2015. In the vide Sue talks about her involvement with the charity and how she has seen it grow in strength over the … Continue reading Sue’s journey at the Nystagmus Network
We are delighted to announce that the Nystagmus Network is launching its new blog! Check out the video above which gives you all the information you will need about what we are hoping to achieve through the blog. Remember to keep checking back for the latest post!
The Nystagmus Network is on the look out for more volunteers to help us support our growing community! We believe that a peer-to-peer support model will make a huge impact on everyone in the nystagmus community. This model is based on support being provided by people who understand the impact of nystagmus on the various … Continue reading Volunteer for the Nystagmus Network
Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an … Continue reading Meet Lucie!
I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened … Continue reading Mark’s story
have always enjoyed sport but often found that trying to take part was frustrating due to my nystagmus, particularly with sports that require seeing the movement of a ball and connecting with it. I tried tennis a few times when I was younger but it seemed impossible. I would never be able to play it. … Continue reading Sound tennis
It’s a traumatic experience for parents when their baby is diagnosed with an unknown condition. Mine didn’t know what to do when the doctor told them that their little girl had nystagmus; but then what could they actually do? It’s just one of those things. Yet it didn’t seem like that at the time. Even … Continue reading Can people see past my wobbly eyes?
I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all … Continue reading I’m the parent I never thought I’d be
I’d be foolish to pretend that secondary school was a breeze with nystagmus. There were two ways to go about it; suffer in silence, or rise to the challenge. As for me, admittedly I did both. The first obstacle was getting there, which shouldn’t have been a problem because I lived local. My mum walked … Continue reading Wobble and me (part 2)