How amazing are you?

We asked you to send us all your nystagmus success stories to help us celebrate Nystagmus Awareness Day 2018 in style. You didn't disappoint us. In today's Focus there's a round up of just some of your amazing stories. It's not too late to send us your story and please remember to donate £5, if you can, to help the Nystagmus Network support even more people with nystagmus to be amazing.

Thank you!

Send us your story

How amazing are Katrina, Ella, Freya and Suzanne?

Katrina thinks she's just a regular student who happens to have nystagmus. To us she's a fabulous nystagmus ambassador. Ella is a talented singer/songwriter with nystagmus and optic nerve hypoplasia who has a stellar music career ahead of her. Freya was born with nystagmus and always struggled at school, but this didn't stop her going on to university and achieving her ambitions. Suzanne's amazing journey through light design will strike a chord with everyone who understands nystagmus. 

Read all our amazing stories here


How will you mark Nystagmus Awareness Day?

With events happening all over the UK and around the world to celebrate national and international Nystagmus Awareness Day, how will you be spending the big day?

Please help us raise awareness of nystagmus to make life just that bit easier for everyone affected by nystagmus.

Nystagmus Awareness Day

How amazing are Ben, Rylan, Charlie and Jac?

Ben's parents thought he'd never play football, but now he's the man of the match. Despite having nystagmus, 6 year old Rylan is the first free reader in his class. Charlie has been bullied at school because of his sight problems, but he's determined to succeed and he's about to embark on the trip of a lifetime. He's also a poet. Jac's Mum and Dad always encourage him to try everything, despite his nystagmus. This month he's going to run 2.5k to raise money for the Nystagmus Network!

Read all our amazing stories here


A unique way to raise awareness of nystagmus

We're grateful to Vicki for starting a bit of a craze. She's been taking part in the 'Rocks of Swindon' project, hiding and finding rocks around Swindon. She says: "I thought this would be a great way to raise awareness. My 4 year old son was born with nystagmus in one eye. Not a lot of people know what it is or have ever heard of it, so hopefully this will help spread the word!"

It certainly will, Vicki! Well done! Since we shared your story on Facebook we've had people hiding nystagmus rocks all over!

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Members only tickets - booking opens 28 June

Subscribed members will soon be receiving their exclusive links to book their free places at Open Day 2018.

Become a member


Help us win £450

Small Charity Week begins on Monday 18 June. If the Nystagmus Network is your favourite small charity, why not enter the Facebook, Twitter or Instagram competition to help us win £450?

How to enter:

Take a photo of yourself holding up your Small Charity Week poster that reads:

“I love Nystagmus Network because (and say why you love the charity)”.

Then simply post it to Twitter, Instagram or the Small Charity Week Facebook page, depending which competition you want to take part in.

Make sure you include the #ILoveSmallCharities hashtag when you post your photograph.

Thank you for your support!

Download your poster here


Nystagmus Network trustees at Paddington

On Monday 18 June, to celebrate 'nystagmus in the open', a group of Nystagmus Network trustees will be raising awareness of nystagmus and conducting a charity fundraising collection at Paddington Station, London.

If you happen to be passing through the station that day, please look out for them and say hello. They'll be wearing their Nystagmus Network T-shirts, so they should be easy to spot.

Make your "nystagmus in the open" donation here


Menna and Jen are coming to Snow Camp 

If you've signed up for the very first Nystagmus Network Snow Camp of 2018 this Sunday, 17 June, you're in very good company. Along with the Outspan Rebels VI ski team, their chief coach, Charlotte Evans, MBE, internationally acclaimed photographer, David Katz and the Nystagmus Network's very own Rachel, PyeongChang gold medallists, Menna and Jen, will also be joining us in the Snow Dome.

How brilliant is that?

Snow Camp VIPs


Join our #nystagmusintheopen Thunderclap!

There are just a few days left to sign up to our #nystagmusintheopen Thunderclap. At 12 midday on Wednesday 20 June, let's get our hashtag trending on social media. Sign up from your Facebook or Twitter account (or both!) and let's get the whole world talking about nystagmus.

Thank you to everyone for your support. 

Sign up to the thunderclap here

Albinism Awareness Day

Wednesday 13 June was Albinism Awareness Day. We celebrated with our sister charity, the Albinism Fellowship UK. We invited AFUK Chair, Roselle Potts, to write a guest post on our blog about the importance of raising understanding of albinism.

Read AFUK's post here


The Big Blind Walk is almost there

Julian has been walking 1,000 from Land's End to John O'Groats since 29 April to raise awareness of the need for more eye research in the UK.

On Wednesday 20 June, Nystagmus Awareness Day, he'll be joined by a very special guest. More news in our next edition.

Julian is due to complete his walk on Friday 22 June.

Follow Julian's Big Blind Walk blog here

Please consider making a donation 

The Nystagmus Network relies entirely on membership subscriptions, fundraising and donations to continue its important work, providing support and information to the nystagmus community, raising awareness and funding research.

We can't do any of this without your support.

Please donate today

Do you follow us on social media? Join in our daily conversations on Facebook and keep up with all the latest #nystagmus news on Twitter.

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Members of the Nystagmus Network are automatically signed up to receive this fortnightly digital newsletter every other Thursday directly into their inbox. We believe it's a great way to let you know all the latest nystagmus news and keep you informed about events and research participation opportunities. Other subscribers include our fundraisers, donors and supporters. Please remember that there is an unsubscribe button at the bottom of each and every issue, so if, at any time, you decide you no longer wish to hear from us, please simply click the link.

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