Nystagmus Network wins £1,000 Movement for Good award


Nystagmus Network wins £1,000 Movement for Good award The Nystagmus Network has won a £1,000 Movement for Good award from Ecclesiastical Insurance Group thanks to nominations from the public. The Nystagmus Network is one of 500 winners in specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million to charities this summer. Although at … Continue reading Nystagmus Network wins £1,000 Movement for Good award

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?

Two new nystagmus research projects funded


Fight for Sight and Nystagmus Network are funding research into the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition. People with nystagmus often experience glare, but until now this has not been researched thoroughly. The team at University of Leicester, led by Dr Frank … Continue reading Two new nystagmus research projects funded

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?

How amazing is Doug?


Earlier this year, Doug ran the Royal Parks Half Marathon for the Nystagmus Network. He raised £200. Doug says: 13.1 miles. 25,000 steps, a step for every time someone has told me I need to have my glasses checked. This is Doug’s amazing nystagmus story I was born with congenital horizontal nystagmus and astigmatism, thought … Continue reading How amazing is Doug?

Trustees publish their annual review


The Annual Report 2020 by trustees of the Nystagmus Network is now lodged with the Charity Commission and available to the public to read. 2020 was undoubtedly a most challenging year for the nystagmus community, the Nystagmus Network, people and services everywhere. Despite the challenges of Covid-19, however, Chair of Trustees, Tim Cuddeford is pleased … Continue reading Trustees publish their annual review