Open Day - members only booking - 28 June

You won't want to miss this year's Open Day. We have such a brilliant line up of speakers, presentations, activities and exhibitions planned. Our keynote speaker is Marsha De Cordova MP. All the top UK nystagmus research teams will be there too and we will be joined by the fabulously inspirational David Katz.  Members will be notified how to book their free tickets by email or letter. Any remaining tickets will go on sale to non-members a month later. 

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
Sponsor Peter here


Nystagmus Network trustees raise £1k from 10k

Charity trustees Peter Greenwood and Sam Jones showed their support for the nystagmus community on Bank Holiday Monday when they ran the London Vitality 10k and raised around £1,000 in sponsorship between them.

Sam is, of course, the reason the charity exists. His mother, our Founder and President, Vivien Jones, speaks movingly about discovering her son had nystagmus in our charity video.

Watch our charity video here
Sponsor Sam here


VIP guests coming to Snow Camp on 17 June

If you've signed up for the very first Nystagmus Network Snow Camp of 2018 you're in very good company. Click the link below to find out who will be joining us in the Snow Dome.

Snow Camp VIPs


Order your free Nystagmus Network cake flags

We're grateful to all those lovely bakers who make and sell loads of fabulous cakes every Nystagmus Awareness Day. This year we've a special treat for you - cake flags.

Get your cake flags here


Welcome to Sue's garden

Sue will be opening her Lincolnshire garden to the public on Sunday 24 June for nystagmus in the open. There will be lots to see and do and a chance to meet Sue and find out why the Nystagmus Network is so important to her.

Everyone welcome!

See photos of Sue's garden here


Join our #nystagmusintheopen Thunderclap!

At 12 midday on Wednesday 20 June, with your support, we can get #nystagmusintheopen trending on social media. All you need to do is sign up from your Facebook or Twitter account (you can do both!) and there'll be a nystagmus thunderclap rippling across the world.
How cool is that?

Sign up to the thunderclap here

Our 'amazing' stories are coming soon!

From 1st to 24th June we'll be publishing all your amazing nystagmus stories on Facebook and on our blog, with a round up in the next 2 issues of Focus. Alongside each story we'll be asking people to donate just £5 to help the Nystagmus Network keep on supporting more people with nystagmus to be amazing. It's not too late to send us your story.

Send us your story

We voted for Ben!

Ben Haynes is a very talented musician and song writer who just happens to have nystagmus and albinism. He's a semi finalist in a music competition. The prize is to perform in a great music venue. We've been supporting Ben on Twitter and Facebook to gain as many votes as possible.

Voting has now closed, but you can still enjoy Ben's song.

Hear Ben's song


Katrina joins the Big Blind Walk 

Katrina is a student in Carlisle. She has nystagmus. This week she spent some time walking with Julian Jackson as his Big Blind Walk took him through Carlisle and on to Scotland.

Katrina says: "It was an absolute pleasure to meet Julian and to walk with him." 

Julian messaged us to say: "I was delighted to have Katrina walk alongside me for a distance out of Carlisle early this morning. We discussed her Nystagmus and I am so grateful for the support you have given the Big Blind Walk." 

We say: "Well done, Katrina. You're a fabulous nystagmus ambassador!"

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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