Edwin smiles for the camera. He is wearing dark glasses, leather gloves and a bandana.

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 program. This program has become a model for other agencies like mine nationwide.

In addition, I lead the effort to develop a CQI process that saved state taxpayers millions of dollars.

Our agency’s employees’ commitment to helping others resulted in raising hundreds of thousands of dollars for Special Olympics athletes during my tenure.

One of my biggest joys is riding my Harley Davidson.

Our challenge is to not accept the limitations others set for us, and strive to be the best we can be!

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

Wyatt smiles for the camera. He is wearing headphones and holding a games console.

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 him. 

With that, my husband and I encouraged Wyatt. Whatever his passion he always tried. He always gave it 110% and succeeded!

Wyatt is 9 now. He loves his bike, rollerblades, driving the go-kart and his FAVOURITE thing to do is sit down and read a good book! 

Words cannot describe how great Wyatt is doing! I can’t wait to see what the future holds for him! 

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]

The logos of Fight for Sight and the Nystagmus Network

Two new nystagmus research projects funded

Fight for Sight and Nystagmus Network are funding research into the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition. People with nystagmus often experience glare, but until now this has not been researched thoroughly.

The team at University of Leicester, led by Dr Frank Proudlock, will study 4 groups of people: with albinism; with idiopathic infantile nystagmus; with achromatopsia; without nystagmus. They aim to determine the most effective way to measure glare, its impact on reading and whether tinted glasses or reading overlays can help. It’s hoped that a better understanding of the impact of glare will help parents, teachers, doctors and people with nystagmus to come up with the best solutions for reading in their education, work and day-to-day life.

A further small grant award to Leicester

Dr Mervyn Thomas, also of the University of Leicester, has won the Fight for Sight/Nystagmus Network funded small grant award for a nystagmus related research project. The work, delayed from 2020 due to the COVID pandemic, will now start later this month.

Vivien Jones, chairman of the Nystagmus Network’s Research Committee, said: “The Nystagmus Network is delighted that its joint funding relationship with Fight for Sight has led to two awards – first to Frank Proudlock for his winning bid for a PhD student post. We greatly look forward to seeing important research flow from this appointment, which will start later this year and represents the biggest-ever single investment by the Nystagmus Network in research. We are equally pleased to see that Mervyn Thomas has won the small grant award for his proposal to develop a low-cost system for the recording and analysis of eye movement characteristics, suitable for clinic-based assessments.”

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]

Emma at her fundraising stall wearing a face mask.

Trustees publish their annual review

The Annual Report 2020 by trustees of the Nystagmus Network is now lodged with the Charity Commission and available to the public to read.

2020 was undoubtedly a most challenging year for the nystagmus community, the Nystagmus Network, people and services everywhere.

Despite the challenges of Covid-19, however, Chair of Trustees, Tim Cuddeford is pleased to report that 2020 was another positive year for the Nystagmus Network, thanks to the flexibility, innovation and resourcefulness of charity staff, volunteers, trustees and supporters. Thanks go, too, to National Lottery Players. Funding from the National Lottery Community Fund helped support the charity through some very difficult months.

The Nystagmus Network has been funding nystagmus research since the 1990s and continued to do so in 2020, with a new PhD post awarded, bringing another expert to the table, and another small grant award, both thanks to the charity’s funding partnership with Fight for Sight.

To find out how the charity adapted and developed to meet the changing needs of the nystagmus community during the pandemic, whilst continuing to fulfil its charitable objectives of support, awareness and research, you can read the full report by following the link below.

Read the Annual Report 2020 here

Read annual reports since 2015 here

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