With Nystagmus Awareness Day on 20 June 2019 this year, here is a new update on activities from the Nystagmus Network, a charity that the Albinism Fellowship works with closely.

How amazing are you?

In the run up to Nystagmus Awareness Day 2019, we’re once again sharing some amazing nystagmus success stories. You can read all our amazing stories on our blog, here, on our Facebook Page or on Twitter. If you’d like us to share your amazing story of success or achievement despite, or maybe even because of, having nystagmus, please send a few words and a photo to info@nystagmusnet.org

parkrun for Nystagmus Awareness Day 2019

This year we’re encouraging everyone to take part in a parkrun, to get out into their local park and walk or run for nystagmus awareness.

You can take part in parkrun just about anywhere in the country, every weekend of the year. But what better way to raise awareness of nystagmus than to do your parkrun during “wobbly week” on 22 and 23 June?

All park runs are accessible to people with impaired vision.

Nystagmus Awareness Day events

Lots of people are organising their own events on Nystagmus Awareness Day itself, Thursday 20 June, or during ‘Wobbly Week’ which runs from 17 to 23 June, including good old “wobbly Wednesday” on 19 June. There will be special assemblies in schools and lots of displays in hospitals and clinics.

Get your Nystagmus Awareness Day inspiration here.

FREE resources

We have free to download posters, PowerPoint presentations, lesson plans, bunting and loads more!

FIND EVERYTHING YOU NEED in our online shop today.

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 invite someone to a Nystagmus Awareness Day event or tell someone what you’re doing and why, that’s one more person who understands what nystagmus is.

Every pound you raise 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.

Let’s make Nystagmus Awareness Day 2019 the biggest and best ever!