Nystagmus Awareness Day


National and international Nystagmus Awareness Day – 20 JUNE

Nystagmus Awareness Day – in lockdown

We may all have been staying at home on 20 June 2020, but we still marked national and international Nystagmus Awareness Day. Here are just some of the ways you got involved.

How amazing are you?

In the run up to Nystagmus Awareness Day 2020, we once again asked 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. 2020 was even more amazing!

Read a round up of Nystagmus Awareness Day 2020 activities here

Our wobbly photography competition – judged by David Katz

We wanted to raise as much awareness of nystagmus as possible this year and make sure that everyone had a chance to take part, so we ran 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 we asked him to judge our 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.”

Wilson won our photography competition – read more here

Wilson won the photography competition this year and broke everyone’s heart. Congratulations, Wilson.

Nystagmus is 

Our fabulous new publication, Nystagmus is …, inspired by the wonderful Roger, was 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 … is available FREE from our online shop from 20 June 2020.

Order your free copy of Nystagmus is … here

Home school for Nystagmus Awareness Day

We produced loads of teaching and learning materials 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”. These can be used on 20 June or any other day to help raise awareness of nystagmus.

Find your free to download materials here

Awareness Day fundraisers

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

Find out about fundraising opportunities 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 on 20 June every year

Thank you for your support