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]

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]

The logo of the Nystagmus Awareness Day 20 June.

Nystagmus Awareness Day 20 June 20

Nystagmus Awareness Day – 20 June 2020

It’s national and international Nystagmus Awareness Day on Saturday 20 June 2020. We may all be staying at home this year, but we can still mark the day and raise awareness to ensure that the 1 in 1,000 adults and children living with nystagmus enjoys a greater understanding of their condition and a better quality of life as a result. Here are just some of the ways people can get involved.

How amazing are you?

In the lead up to the big day, the charity is running its ‘how amazing are you?’ campaign, sharing stories of adults and children who have achieved great things despite living with nystagmus, or maybe even because they do. These stories bring a great deal of hope and comfort to families where there is a new diagnosis of nystagmus. Anyone who has nystagmus can submit their story.

Our wobbly photography competition

We want to raise as much awareness of nystagmus as possible this year and make sure that everyone has a chance to take part, so we’re running our wobbly photography competition: The View From My Window

We know that lots of people who have nystagmus are also keen photographers. Most notably, of course, is internationally acclaimed photographer, David Katz.

David revealed only in recent years, in his film “Through my Lenses” that he has ocular albinism and nystagmus and is actually registered blind. Nevertheless he has enjoyed a stellar career in photography and has created some of the most iconic press images.

When the charity asked him to judge the competition, David said “I would be absolutely delighted and very honoured to judge the Nystagmus Network competition … It has constantly amazed me since making my story public how many of us with VI are into photography.”

Whether you have nystagmus or not, whether you have the latest camera or just a phone, and wherever you are in the world, you can take part.

Nystagmus is 

 The charity launches a brand new publication, Nystagmus is …, inspired by 80 year old Roger, on Nystagmus Awareness Day 2020. The booklet is full of contributions from people, like Roger, who live with nystagmus, describing how they feel about it and how it affects their lives. For the first time people can read what it’s really like to have nystagmus by the people who really know.

Nystagmus is … will be available FREE from the charity’s online shop from 20 June 2020.

Why do we need Nystagmus Awareness Day?

The Nystagmus Network raises awareness of the condition every single day of the year, because they believe that the more people who know about it the better. It means that adults and children who have nystagmus will get the help, support and services they need in education, employment, health, mobility and leisure to be able to lead a successful and independent life.

The charity’s Information and Development Manager, Sue Ricketts says: “Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that the Nystagmus community is here and their voices need to be heard.”

Every time someone takes part in Nystagmus Awareness Day or tells someone what they’re doing and why, that’s one more person who understands what nystagmus is.

Every pound raised or donated helps the Nystagmus Network support research teams across the UK to investigate this hugely complex condition, to find better diagnosis, treatments and continue to work towards prevention and cure.

Ends

Notes to editors

Contact: Sue Ricketts, Nystagmus Network

Email: [email protected]

Tel: 01427 718093

Website:        https://nystagmusnetwork.org/nystagmus-awareness-day/

Facebook:      https://www.facebook.com/NystagmusNetwork/

Twitter:          https://twitter.com/NystagmusUK

Images and logos available on request

Nystagmus is a serious, lifelong, incurable form of visual impairment where the eyes constantly move uncontrollably, affecting focus and depth perception. At least 1 in 1,000 babies are born with nystagmus. Many other people acquire nystagmus beyond infancy and into later life.

The Nystagmus Network is a registered charity in England and Wales, number 1180450. Our charitable objectives are to provide support and information, to raise awareness and to fund research.

5 images of amazing people.

How amazing are you?

In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories.

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 or achievement despite, or maybe even because of, having nystagmus.

Let’s make 2020 even more amazing!

Email your amazing nystagmus stories, plus photo, please, to [email protected].