Since our foundation in 1984 we’ve seen a lot of changes, shared a lot of stories and supported a lot of people living with nystagmus, all thanks to one woman, Vivien Jones.
Vivien – our founder
How could Vivien Jones have guessed, as she sat in 1984 at her kitchen table stuffing envelopes with information leaflets about nystagmus for other parents just like her, whilst her infant son, Sam newly diagnosed with nystagmus, slept upstairs in his cot, that 40 years later she would be at the helm of a national charity, leading the way in nystagmus research, awareness, support and information.
Watch Vivien’s story on video here
Onyeka’s Story
“Growing up, I never heard the word nystagmus.”
Read Onyeka’s story here
Sue’s 1984 Story
“In 1984 I had never heard of nystagmus and had no connection with the condition at all.”
Read Sue’s 1984 story here
Cohen’s Story
“He has a lovely group of friends in school and every school report is about him growing in confidence which is so nice to hear.”
Read Cohen’s story here
Ava’s Story
Ava was born with congenital nystagmus. She loves rugby and swimming. She’s full of life and lets nothing get in her way.
Peter’s 1984 Story
“At 12 years old, I was preparing for my first summer Scout camp in Guernsey, which required a 10-hour ferry ride from Plymouth, marking my first time leaving mainland UK.”
Read Peter’s story here
Ruby’s Story
“Ruby has just turned 5 and started Reception in September 2023 which she is loving! Her favourite colour is purple. She loves the BBC TV show Dog Squad and can’t wait till she can get a guide dog as she thinks that they are amazing.”
Read Ruby’s story here
Marlow’s Story
“I was born with congenital nystagmus and have been apart of the network for 10 years. I am 24 years old and a middle school history teacher. Aside from my ruby colored hair and red being my favorite color, I am an active member of our community.”
Read Marlow’s story here
Paul’s Story
“Despite its challenges i’m so happy to finally(finally!) properly embrace my condition. Thankfully as I’ve had this forever, my brain does a lot of correction for me which is huge. “