Grayson enjoys a rope swing by a lake. He is wearing dark glasses.

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 name and read some small words. One thing that makes me sad about my Nystagmus is not being able to drive my own car but my Sissy said she is going to buy a Tesla in black when she is a grown up and drive me everywhere, so that makes me really happy. 

Note from Mum:

Grayson is so kind and loving with a heart of pure gold. They broke the mould with him. I could burst with pride at the obstacles he faces but is never held back. He really is an amazing little boy. The best. It just goes to show if you believe in yourself, you can achieve anything. He is our very own little Champ. 

Share your amazing nystagmus success story with us at [email protected]

Poppy wears dance training gear and poses beside a banner.

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 of stairs!) but I know I’ll be fine when I get there.

Before lockdown I competed in my first dance competition and first ever knockout round and absolutely loved every minute, although it was difficult to pick up choreography with so many people (I tried). I’m so glad that our dance classes have started back as this is my escape, if only for a couple of hours.

I just want to let others know you can do anything and be anything you want. You are unstoppable.

To share your amazing nystagmus success story, please email [email protected]

Katrina wears her Girl Power T shirt.

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 and college and have got a Level 2 Business and Tourism and a Level 2 and 3 IT qualifications.

For the past 2 and a half years I have worked on a number of contracts with Vision Express, for Carlisle City Council and in two different schools.

I also attend Clubbercise once a week in a local community centre and also Girl Power fitness classes. These have helped me keep normality in my life during the COVID pandemic.

I have had congenital nystagmus all my life and I have never let this hold me back, especially through school and college.

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

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 some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]

Tim holding an award

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 school I took a degree in Fine Art in Nottingham and then moved on to the Royal College of Art where I took a Master’s degree in film.

Somehow, despite my lack of visual acuity, I have managed to forge a career in post-production sound for film and television. 

Much of my work is re-recording dialogue with cast members and my hearing has been my asset. I may not be able to see dialogue in sync as well as my colleagues, but my hearing is what I rely on.

People I have worked with aren’t really aware of the full extent of my condition. I hide it well and none of the actors I have worked with have even noticed.

My work has taken me to the US and Europe and I have had a pretty successful time working on films such as “Chicken Run”, “Mamma Mia” and “Les Miserables”, as well as major TV series including “Brave New World”, “The Nevers” and every episode of “Game of Thrones”. You can hear my voice in many of these shows, too.

I have been nominated for numerous awards along the way and have won seven MPSE (Motion Picture Sound Editors Guild) Golden Reels and four Primetime EMMYs. I ain’t done bad for a lad that can’t see too well.

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

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 some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]

Doug wearing a wetsuit and swimming goggles.

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 to be due to ocular albinism. It was noticed by my mum at birth as her wobbly headed child started his driving-licence-restricted, squinting-to-focus life. I was brought up no different to my brother, people commending my parents for not letting my condition hinder or stop me, to which they replied, “what disability?!”. I had a reading board at school, extra time in exams and looked left in school photos (the side my eyes move less). I was encouraged to play any sport I wanted. Finding out the hard way that cricket was not for me after taking two balls to a sensitive area and being caught out with 2 runs. I have always been a keen swimmer, runner, cyclist and still play squash (I can play due to the simple black/white contrast). During my self-conscious teenage phase at school, I didn’t wear glasses and struggled on. I would sit at the front of class and luckily had helpful teachers and friends. My friends poked fun at me by creating bespoke miniature eye test charts and were in hysterics when they saw my “blown up” GCSE geography exam map. It took up two tables and I had to walk around it like a war cabinet preparing for an ambush. It was joked in my yearbook that I couldn’t see past the end of my nose, unsure whether this was because of my rubbish eyesight or my big nose.

I only started wearing glasses again during sixth form and struggled, due to astigmatism, to wear contact lenses. Now, I cannot imagine not wearing glasses, even with my lockdown moustache and big nose, I look like a joke-shop disguise. After sixth form, I was lucky enough to accept a place at Sheffield University to study medicine. Their disability and dyslexia services were brilliant and although I did not have to call on them, were thorough in the assessment of my needs and in offering me support.  I graduated from medical school and started Emergency Medicine training after my foundation doctor years. I am currently on a year out and undertaking a Sports and Exercise Medicine Masters. I have been fortunate enough to continue my passion for sport by having experience during university working with elite-level teams and I currently work for a Premier League team and their academy as a doctor.

I have struggled to come up with lots of examples as to how I have had to adapt to life with nystagmus. I am thankful for my parents bringing me up with no fuss and just getting on with things. One major example is driving. I was told early on that I wouldn’t be able to drive and therefore wasn’t disappointed when at 17, all my friends were learning. Instead, my friends became my chauffeurs or taxi drivers. As a result, I have had to become public transport savvy – I say as the bus I wanted drives past my squinting face because I struggle to see the numbers.

I was introduced to the Nystagmus Network charity after my girlfriend pointed out Richard Osman, the nystagmus messiah, on TV, although to me his eyes look normal… I am amazed by the charity’s work to support those with nystagmus and spreading the word about the condition. It is a wonderful community. I was incredibly proud and emotional running the Royal Park Half Marathon and raising money for a worthy cause so close to my heart.

I was going to open this blog by saying “I have suffered with nystagmus for…”. But this is completely incorrect, and I do not see my nystagmus as a hindrance. I see it as my condition that makes me “me” and one that I have had to adapt to throughout my life without necessarily realising. I do not think it has held me back or stopped me doing anything. I would love to inspire young people with nystagmus, or parents of, to continue adapting and to not let it hold them back from doing what they want to (within legal limits as you may not legally be allowed to drive).

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

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 some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]

A Nystagmus Network scented candle held in someone's hands. The candle is not lit.

Special edition scented candle raises funds for the Nystagmus Network

This lovely scented candle is specially created for the Nystagmus Network by Oli at No. 14 The Wick to celebrate Nystagmus Awareness Day 2021. The scent is Bergamot and Sage using a blend of essential and fragrance oils. 

The oils have been chosen for the following aromatherapy attributes.

BERGAMOT – Uplifting and refreshing. Reduces stress and anxiety

SAGE – Stimulating and soothing. Helps clarify the mind and promotes attentiveness

Oli says: “I wanted to play on the meaning of ‘sage’ too. As in, ‘someone who is wise and has attained this wisdom through experience’. I felt this embodied the charity and all that is stands for in sharing it’s knowledge, advice and support to its members. 

“Clarity is something that the charity provided for me when our children were first diagnosed with nystagmus and the support provided certainly helped us through some difficult or challenging times.

“Most of all I wanted to capture a fragrance that was uplifting and positive which is something we always feel when we meet our Nystagmus Network family. Knowing we are not alone and that there is advice or support from a ‘wise sage’  if needed.”

Love and light, Oli x

Product Details:

220g soy wax candle

Approx. 40 hour burn-time

Matt White glass container

Order your candle here

Sorry, but we can only ship candles to UK destinations

Tim Pearce

Thank you, Tim

Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children.

Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky preview, but no spoilers, for his follow up book, due out later this summer. He is currently writing book three in the series.

When asked what spurred him to write, Tim said he has always loved being creative and has a passion for writing strong characters. He also loves a plot twist and tries to cram in as many as he can to keep his young readers on the edge of their seats.

The Nystagmus Network children’s story

Tim then led the children taking part in the online workshop to write their own story, collaboratively, with everyone chipping in ideas for character names, appearance and even the design of their slippers! Tim promises that the nystagmus children’s story will appear as part of his next book.

Order Tim’s book on Amazon Smile here

Inspired by Tim?

Raindrops story writing and drawing competition for children

What do raindrops mean to you? What do they smell, sound, feel or taste like? What do they make you think of? How do they capture your imagination?

The Nystagmus Network Raindrops competition celebrates the wonderful creativity of children’s writing and illustration.

The best stories and drawings will be published in a special book which will be available to purchase from September 2021.

How to enter

The competition is open to all children with or without nystagmus, aged 5 to 14 years. There will be winners in each age category.

Download the competition rules and an entry form here

Completed entries (entry form plus story and / or drawing on Raindrops writing paper or drawing paper) should be emailed to [email protected] Deadline: 23:59 on Saturday 19 June

Prizes and a book

There will be some fabulous prizes for the winners of each age category, including books signed by your favourite children’s author. As many stories and drawings as possible will be published in a book which will be available for sale from September.

Get sponsored

If your little one is a reluctant writer, why not encourage them by asking friends and family to sponsor them 1p a word?

Download a Raindrops sponsor form here

A woman undergoing a sight test.

Nystagmus news for eye care professionals

The Nystagmus Network now produces a digital newsletter for Dispensing Opticians and Optometrists. The first edition has just been published, bringing nystagmus news, stories and information directly to high street and community practices.

Read the newsletter and subscribe here

A child takes part in an online writing workshop with author, Helen Rutter. On his desk is Helen's book 'The Boy Who Made Everyone Laugh'.

Children’s writing workshops this summer

Did you miss the children’s online writing workshop with fabulous children’s author, Helen Rutter? What a shame. That means you didn’t get to hear all about Helen’s inspiration behind her book ‘The Boy Who Made Everyone Laugh’ and you didn’t get to meet her dog, Billy Whizz!

Never mind. There are two more workshops still to come.

The first is with ‘Secret Agent Striker’ author, Tim Pearce and the second is with children’s writer and illustrator, Claire Alexander, author of ‘A Little Bit Different’.

Meet Tim Pearce

Children aged 7 years and up are invited to join a FREE interactive workshop with Tim Pearce, author of Secret Agent Striker. Tim will share his passion for writing, his inspiration and what he plans to write about next. You can send your questions for Tim in advance to [email protected]

Monday 10 May: 4:30 to 5:30pm

Book the Zoom workshop with Tim here

Order Tim’s book on amazon Smile here

Meet Claire Alexander

The Nystagmus Network welcomes children aged 7 years and up to a FREE interactive online workshop with Claire Alexander, author of A Little Bit Different and her new book A Little Bit of Courage. Claire will share her passion for writing and illustration her inspiration and what she plans to write about next. You can send your questions for Claire in advance to [email protected]

Thursday 17 June: 4:30 to 5:30pm

Book the Zoom workshop with Claire here

Order Claire’s books on Amazon Smile here and here

Harry reads his Raindrops story

Harry’s story for Raindrops

This is Harry. Harry is 9 years old. He’s just written his story for the Raindrops story writing competition. It’s about Raindrops and what they make him think of.

Well done, Harry.

We look forward to reading yours and all the other stories in the fabulous Raindrops story book to be published later this year.

Raindrops competition details here