Nystagmus Awareness Day 2020

We may all be staying at home, but we can still mark national and international Nystagmus Awareness Day. Here are just some of the ways you can get involved.

How amazing are you?

In the run up to Nystagmus Awareness Day 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].

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. 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.

Details coming soon

Our wobbly Quiz

The Nystagmus Network is running a Virtual Quiz Night every Saturday at 7pm throughout lockdown. On Nystagmus Awareness Day, 20 June, the quiz promises to be our biggest and best yet. There are cash prizes for 1st, 2nd and 3rd places. So what are you waiting for? Get everyone signed up now!

Sign up for the quiz here

Nystagmus is 

Our fabulous new publication, Nystagmus is …, inspired by the wonderful Roger, will be launched on Nystagmus Awareness Day 2020. The booklet is full of contributions from people who have 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 our online shop on 20 June 2020, but you can pre-order your copy NOW. Simply email us at [email protected].

Home school for Nystagmus Awareness Day

We have loads of teaching and learning materials available to help mark Nystagmus Awareness Day. There are posters to colour, bunting to make, a PowerPoint presentation, a lesson plan and our booklet especially for children ‘Wobbly Eyes”.

Find your free to download materials here

Lockdown fundraisers

Lockdown doesn’t stop us! Don’t let it stop you! Especially not on Nystagmus Awareness Day!

Find out about our lockdown fundraisers here

Why do we need Nystagmus Awareness Day?

Here at the Nystagmus Network we raise awareness of the condition every single day of the year, because we 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 and everyone affected will enjoy a better quality of life.

Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that we are here and our voices need to be heard. Every time you take part in Nystagmus Awareness Day or tell someone what you’re doing and why, that’s one more person who understands what nystagmus is.

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

Please take part in Nystagmus Awareness Day 2020

Thank you for your support

Have you sent in your photo?

There’s still time to enter our Christmas 2018 photo competition.

Entrants can be any age. They must have nystagmus themselves or be the close relative of someone who does.

To enter the competition please submit 1 high resolution image only, which must be your own work. The subject matter is simply Christmas.

The winning photograph will feature on our 2019 Christmas cards.

Please email your photograph, by no later than Thursday 31 January to [email protected].

We’ve already had some fabulous entries, including this one from Menh.

Our Christmas photo competition

Following the success of the Nystagmus Network photography competition in 2017 in honour of our former trustee, the late Steve McKay, we’ve decided to launch a Christmas 2018 photo competition.

The winning photograph will feature on our 2019 Christmas cards.

Entrants can be any age. They must have nystagmus themselves or be the close relative of someone who does.

To enter the competition please submit 1 high resolution image only, which must be your own work. The subject matter is simply Christmas.

Please email your photograph, by no later than Thursday 31 January to [email protected].

To give you an idea of the standard of photography, you can review our previous finalists’ pictures here …

Photography competition 2017 entries
Go to this Sway

The picture above is the 2017 winning photograph by Hanna. The subject last time was not Christmas, but the ‘built environment’.

World Film Première – Through my Lenses

The Nystagmus Network was proud to be granted permission to hold the first public screening anywhere in the world of a brand new short film about nystagmus at our 2017 Open Day in Birmingham on 30 September. Almost 200 members of the nystagmus community were present to watch the film. The film’s creator is a member of the Nystagmus Network.

Internationally acclaimed photographer David Katz shares his story in the film Through My Lenses which describes his journey from being diagnosed as blind at three months old to becoming one of the top sports photographers in the British national press by the time he was 20.

Through the film, David shows how he excelled in his chosen career of over 30 years, working as a highly respected and accomplished photographer for national and international newspapers and media, while keeping the fact that he is legally blind from almost everyone who knew him.

Remarkably, this career at the highest level of international media encompassed not only press photography, notably capturing shots of the British Royal Family including the Queen, and intimate images of celebrities such as Elton John and Amy Winehouse, but two long-term photographic documentaries, three political campaigns, and being chosen to be the personal photographer to a Prime Minister.

David created Through My Lenses in order to show what is possible with the right encouragement, persistence, dedication and commitment, and the spirit that anything is possible. His belief, based on his personal experience, is that there is no such word as ‘can’t’, and for anyone with a disability or impairment who is told that something is not possible, to know that it is.

“I was given my first camera when I was seven years old and have been in love with photography ever since,” he says. “I see things in a different way to other people. As a child I found it difficult to express what I saw through drawing or painting – a camera was the next best thing.”

Until now David hasn’t spoken about his condition as he didn’t want to be treated any differently to anyone else but feels the time has now come to share his story in the hope of helping others.

“There is some fantastic work being done out there, by organisations including the #valuable campaign, headed by Caroline Casey, which calls on businesses to recognise the value of one billion people with disability, and the Nystagmus Network. My hope is that I can add to that work and use my experience, knowledge and understanding to show children and their parents that they can achieve anything they want to. I hope my story proves that.” David Katz, September 2017