Joel’s nystagmus story


For Nystagmus Awareness Day 2022 we are delighted to share Joel’s nystagmus story, in his own words: What is nystagmus? Not many people know what nystagmus is. The best way to describe it is movement of the eye without the will of the mind. The condition is characterised by uncontrollable eye movements from side to … Continue reading Joel’s nystagmus story

Join us for the big lunch


As part of the long weekend 2-5 June, to celebrate the Platinum Jubilee of Her Majesty the Queen, the Nystagmus Network is inviting members of the nystagmus community to join us for our very own virtual big lunch. Let’s all get together! Whether you’re lunching at home in the garden, in your street or a … Continue reading Join us for the big lunch

Kevin the Monster comes to life


Did you know that a very special group of young people with nystagmus have helped children’s author, Tim Pearce create a character for his brand new book, Secret Agent Striker Strikes Back? Tim was kind enough to run a children’s story writing workshop for us last year. Tim and the children created a story and … Continue reading Kevin the Monster comes to life

Raindrops on World Book Day


In celebration of World Book Day 2022, we are pleased to announce the publication of the Raindrops story book. This digital publication includes the winning stories, inspired by raindrops, written by Annabelle, Eliana, Harry and Daria. Read what our esteemed judges thought of their Nystagmus Awareness Day 2021 competition entries and the drawings submitted by … Continue reading Raindrops on World Book Day

How amazing is Edwin?


I was born with CN and for the most part consider myself to be lucky compared to many in our group. Service to others has been a significant part of my life. Recently, as Chief of Staff of my state’s second largest agency I was responsible for leading the development of a comprehensive employee wellness … Continue reading How amazing is Edwin?

How amazing is Wyatt?


Wyatt has always had this positive outlook. He is determined, smart, and gives EVERYTHING his all! When he was 4 months old he was diagnosed with Nystagmus. We as parents were told that he would never ride a bike, play sports, or even read a book. Everything he would do would be a challenge for … Continue reading How amazing is Wyatt?

How amazing is Grayson?


I am Grayson and I am 5 on 18 June. I have Ocular Albinism and Nystagmus. When I started school in September, I was very scared and very nervous and was very sad because I was lonely and didn’t have any friends. I have now met lots of new friends and even learnt to write my … Continue reading How amazing is Grayson?

How amazing is Poppy?


My name is Poppy. I’m 11 years old. I was diagnosed with nystagmus when I was 2 months old. I never allow my nystagmus to hold me back. I love dancing at the Lynsey Allen school of ballet and I also love horse riding. I’m so nervous to be starting high school in September (lots … Continue reading How amazing is Poppy?

How amazing is Katrina?


Katrina did well at school, has worked hard throughout the pandemic and keeps herself fit with clubbercise. She says: I have had congenital nystagmus all my life and I have never let it hold me back. This is Katrina’s amazing nystagmus story My name is Katrina, I am 22 years old, I attended mainstream school … Continue reading How amazing is Katrina?

How amazing is Tim?


Tim has a whole clutch of awards for his work. He says: I ain’t done bad for a lad that can’t see too well. This is Tim’s amazing nystagmus story I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to drive. After leaving … Continue reading How amazing is Tim?