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
Claire’s 1984 Story
“On New Year’s Eve 1984 my parents went on their first date. And I guess that’s where my nystagmus story begins.”
Read Claire’s 1984 story here
Patricia’s Story
“My name is Trish (Patricia). I was born in 1956. Nystagmus was virtually unknown back then. My parents struggled to keep me in mainstream school and I faced many challenges including bullies and unkind kids.”
Read Patricia’s story here
Glen’s Story
“I was diagnosed with nystagmus almost from birth and I had glasses from around 18 months. I attended regular state school and struggled to see, however my parents were keen to keep me in mainstream education against the eye specialists advice. I remember going to hospital appointments fairly frequently and my parents had to show examples of my school work to the consultant, to backup their opinion that I should remain in mainstream schooling.”
Read Glen’s story here
Flynn’s Story
“This is Flynn. Flynn was diagnosed with congenital nystagmus at the age of 2. When Flynn was about 6 months old, our health visitor noticed something was not quite right.”
Read Flynn’s story here
Jan’s 1984 Story
“I grew up knowing I was short-sighted but, other than that, I had a pretty normal childhood in a family with five brothers and two sisters.”
Read Jan’s story here
Marsha‘s story
“I was always the clumsy one, always bumping into things and always needed extra support at school.”
Watch Marsha‘s video here
Drew‘s story
“My name is Drew, some may know me as DrewpyDesigns, I was born with Albinism and Nystagmus, but that’s not my full story, I’m a 3 time TTT champion, I’m self employed as a graphic designer, I’m a streamer and content creator as well as ambassador for Speed Of Sight. I have never let my disability stop me and urge others to live their life without a disability stopping their dreams too.”
Read Drew‘s story here
Paul‘s 1984 story
“Sometimes I really don’t know where the time goes. Back in 1984, it was my first year at secondary school and my parents were extremely proud of me for getting into the local grammar school. This was in Ilford, Essex.”
Read Paul‘s 1984 story here
Taylan‘s story
“My name is Taylan. I’m 8 years old and I’m nearly 9. My mummy was really worried when she found out I had nystagmus.”
Read Taylan‘s story here
Angela‘s story
“I am in my 50s and in my generation, there was little awareness or support for people with nystagmus or their parents.”
Read Angela‘s story here
Nosheen‘s story
“I was born on 23 June 1984, three days after the Nystagmus Network was founded. I had no health conditions and lived a healthy life until I was almost 35, when I was diagnosed with a congenital brain condition that caused acquired nystagmus. Doctors do not know why I had no symptoms until this age.
Now, as I celebrate my 40th birthday alongside the Nystagmus Network’s Ruby anniversary, I am also marking five years since my diagnosis. Although nystagmus has changed my life, I still try to do the things I loved before and enjoy spending time with my three children.”
Lyla‘s story
“Lyla was diagnosed with Nystagmus from birth and she is now 5, registered as partially sighted and an absolute superstar who loves to do everything and never lets anything stop her! She has recently started to learn swimming after finding it really difficult to get in the pool and she loves to ride ponies. Yes, she faces many obstacles daily however she meets them all with a gorgeous smile and an infectious personality filled with determination and love!”
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
“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
Kathryn‘s 1984 story
“In September 1984 I started my training as an orthoptist at Moorfields Eye Hospital School of Orthoptics.”