Awareness

Nystagmus Awareness Day – 20 June

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.

Please help us raise awareness of nystagmus on 20 June and every day.

Thank you!

A spotlight on acquired nystagmus

Not all sight loss is obvious

Imagine waking up in the morning and dreading opening your eyes.

As soon as you do, you know what will happen. The world and everything in it will be jumping around. Don’t even try to focus on the time. The numbers will be blurry, all jumbled up and shaking.

You wait for things to settle. Only they never do, not completely. This is your life now, your Groundhog Day, since you acquired nystagmus.

Continue reading “A spotlight on acquired nystagmus”

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.

Please take a moment to meet some members of our team.

Ivy sits on a step wearing her glasses and smiling - without scrunching her face!

Your 25 for ’25 nystagmus stories

Since the very first Nystagmus Awareness Day we’ve been collecting your nystagmus stories to share. Whether you’ve achieved something great or small, despite or maybe even because of your nystagmus, we want to hear from you. Your stories raise awareness of nystagmus and bring hope to parents of newly diagnosed children. Help them know how bright the future can be. Share your story with us at info@nystagmusnet.org Thank you!

Read the stories here

The front cover of the Nystagmus Network's A-Z guide to fundraising.

Fundraising for Nystagmus Awareness Day

Raising money for a good cause is about having fun and raising awareness, too. That’s why we’ve come up with 25 fun ideas for you to try this Nystagmus Awareness Day.

You’ll find them all in our free to download fundraising guide for 2025.

Download your FREE 25 for ’25 special edition of our fundraising guide here.

A man stands in a field of sunflowers with his back to the camera holding a small child wearing sunglasses.

Meet our 25 for ’25ers

Throughout 2025 we’re celebrating the people who have really embraced the 25 for ’25 idea in a big way. Following on from our trustee, Hannah’s 25th birthday challenge, we’re seeing lots of people take on 25 new things to try in 2025, anything from running your first 10k to baking 25 cupcakes.

What’s your 25 for ’25 challenge?

Meet our 25 for ’25ers here.