40 years of stories


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

Vivien and Sam on a beach in 1984.

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

Vicky’s 1984 Story

“My favourite subjects at secondary school in 1984 were hockey, music and maths.

Fast forward 40 years and those subjects still dominate my life. Professionally I’m Finance Director for an AI Consultancy and Treasurer for the Nystagmus Network. In my spare time I play flute for the local orchestra and spending time with my sports-mad family tends to revolve around various sporting events.”

Read Vicky’s story here 

Harshal’s 1984 Story

“The year was 1984 and in a little corner of Middlesex, a baby boy was just starting to explore the world, especially a local park that our family home shared a fence with that had an excellent playground.”

Read Harshal’s story here

John’s 1984 story

“We belong to many tribes, often overlapping, during our lives. The story of my nystagmus tribe starts in 1984. In particular, the day I first met others with nystagmus and parents, like Vivien, of children with nystagmus. It still ranks as one of the most important days in my life.”

Read John’s story here

Onyeka’s Story

Two young children in their smart party clothes are standing next to an elaborate frosted cake.“Growing up, I never heard the word nystagmus.”

Read Onyeka’s story here 

Sue’s 1984 Story

Sue weas a pink polo shirt and carries a beach bag, sunglasses and her shoes. She is on a beach.“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

Cohen smiling for the camera, wearing glasses and a white polo shirt with a black striped collar“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 holds her 'player of the week' certificate for the camera.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

Paul Rose headshot.“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. “

Read Paul’s story here 

Kathryn’s 1984 story

Photo: Kathryn Swanston as a student orthoptist in the Orthoptic Clinic at Moorfields Eye Hospital, High Holborn Branch c. 1984.“In September 1984 I started my training as an orthoptist at Moorfields Eye Hospital School of Orthoptics.”

Read Kathryn’s story here