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?

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?

Nystagmus Awareness Day 20 June 20

Nystagmus Awareness Day – 20 June 2020 It’s national and international Nystagmus Awareness Day on Saturday 20 June 2020. We may all be staying at home this year, but we can still mark the day and raise awareness to ensure that the 1 in 1,000 adults and children living with nystagmus enjoys a greater understanding … Continue reading Nystagmus Awareness Day 20 June 20

How amazing are you?

In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories. Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard … Continue reading How amazing are you?

Nystagmus is …

In the run up to Nystagmus Awareness Day on 20 June, we published lots of your nystagmus success stories in our campaign “How amazing are you?” One of the most popular stories was Roger’s. When Roger first contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” He went on to describe how … Continue reading Nystagmus is …