Awareness
Nystagmus Awareness Day – 20 June
I’m not making this up
Nystagmus can be really difficult to explain to people. Often, one of the hardest things to deal with is that, because they don’t understand it, they don’t always believe what you say. How many times has someone told you to put your glasses on, try harder or stop complaining?
This Nystagmus Awareness Day let’s make sure that as many people as possible get to know more about nystagmus.
Why do we need to raise awareness?
We’re the Nystagmus Network, supporting people living with nystagmus. And that’s our problem right there. So many people have never heard of nystagmus! We need to change that. If more people knew about it there’d be greater understanding and we could really get some robust medical interest in research. So, please help us raise awareness of nystagmus on 20 June and every day. Thank you.
Share your nystagmus story
Find all our #ImNotMakingThisUp stories here
For Nystagmus Awareness Day 2026 we’re asking you to tell us when someone thought you might be making something up about your nystagmus.
Did anyone tell you to get some new glasses, try a bit harder or ask whether you were getting any better?
Children’s poetry competition
For Nystagmus Awareness Day 2026 we’re asking children of all ages to write a poem about nystagmus. Your poem can take any form and be any length, from a haiku to an epic!
Teachers, parents, carers please email finished poems with the child’s full name and age to info@nystagmusnet.org
There will be prizes for the best poems.
Who are the Nystagmus Network?
We’re a group of people dedicated to the nystagmus cause. Most of us either have nystagmus ourselves or support a family member or close friend who does.
Direct, lived experience of nystagmus makes us determined to make a difference.
Make a donation
One of the most challenging things for people living with nystagmus is being disbelieved. Because it isn’t always visible, people are told to simply get glasses, try harder or stop exaggerating. Our campaign ‘I’m not making this up’ gives a voice to that frustration and turns it into a powerful call for understanding.
Please donate to our #ImNotMakingThisUp campaign here Thank you for your support.
Fundraising ideas
Need some inspiration to get your Nystagmus Awareness Day fundraising going?
We have 26 fun ideas in our A-Z guide to fundraising.
Resources for schools
Designed for use in schools and preschools on Nystagmus Awareness Day or any other day, use our lesson plan and PowerPoint to raise awareness of nystagmus and help a child with nystagmus feel more included in the classroom.
Download your free lesson plan here
Resources for clinics
Order supplies of information leaflets for patients or a copy of our PowerPoint presentation to display on screens at reception to help us raise awareness of nystagmus.
Download a PowerPoint presentation for display here
Nystagmus awareness for schools
Our nystagmus friendly learning pack for children in Key Stage 1 is now available for you to download in PDF or Word. Download your pack here.