Nerves of steel!

Four of our six remaining Nystagmus Network abseilers will finally (fingers crossed!) make their leap for nystagmus research this Sunday, 21 October, from the viewing platform at the top of the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park.

After 2 postponements because of the weather, the wait must be agonising.

Every penny raised in sponsorship is going directly into groundbreaking nystagmus research happening right now at Moorfields Eye Hospital and University College, London.

For Claire A, Claire B, Glen and Matt it's almost here (we hope)!

Everyone at Nystagmus Network will be thinking of you and the whole nystagmus community will be cheering you on.

Richard P and Vicky hope to make their leap for nystagmus on 28 October.


Read more here


Clare does it for nystagmus and for Jessica

Clare ran the Royal Parks Half Marathon on Sunday 14 October to raise money for the Nystagmus Network in honour of Jessica, who was born with the condition.

The Royal Parks Half is billed as one of the most picturesque runs in the country, but, sadly, the beautiful autumnal colours were a little washed out by the rain.

Undeterred, Clare has raised almost £900 in sponsorship for the charity and made the whole nystagmus community proud.

After her run she said: "At mile 5 I saw someone with Nystagmus who screamed out and made me so emotional I cried till mile 6!"


Thanks, too, to Andy, Mark and Phillip who also ran on Sunday.

Sponsor Clare here


Walk Eye to Eye for nystagmus research 

You can now sign up to walk Eye to Eye in March 2019 to raise money for nystagmus research at Moorfields Eye Hospital and University College, London .

Choose either the 4 or 14 mile route from the London Eye on the South Bank of the Thames to the iconic eye sign outside Moorfields Eye Hospital.

Join Team Nystagmus Network for the walk to make sure that every penny you raise in sponsorship goes directly into ground-breaking nystagmus research.

We'll be setting off at 11am on Sunday 10 March. Bring the family, bring the dog!

It's going to be the biggest nystagmus get together of the year!

Sign up here


Still to come in this issue of FOCUS

  • The Education Resource HUB
  • Open all hours - our online shop
  • The Nystagmus Network lottery
  • The Nystagmus Network Christmas card!


Education Resource HUB launched

At Open Day 2018 the Nystagmus Network’s volunteer Education Advocate, Frances Lilley, officially launched the charity’s Education Resource HUB.

The HUB is the result of years of research and experience and brings together in one place the resources parents and carers need to navigate their way through mainstream education support for a child with nystagmus, from early years right through to further and higher education.


Visit the HUB


We never close!

We have nystagmus related merchandise for sale (T-shirts, pens, wristbands, knitted nystagmus children) alongside our free to download information documents.

Please visit our shop today - and our online shop is always open!

We're sorry that we're currently sold out of children's T shirts.
They will be back in stock as soon as funding allows.


Visit our shop


Sign up to our lottery!

Did you know that for as little as £1 per week you could be in with the chance to win £25,000? You could, if you sign up to the Nystagmus Network lottery.

Sign up here

Happy Christmas from Ben, Charlotte, Jack and Lilly

At Open Day we ran a competition for children to design the Nystagmus Network 2018 Christmas card. 

Ben and Charlotte, Jack and Lilly worked so hard we decided to incorporte a little bit of all of their designs into our 2018 card - and here's the result! We hope you like it.

You will soon be able to send your cards  -  more news in the next issue of Focus.

Be the first to hear Christmas card news

Christmas shopping online?

Lots of Nystagmus Network supporters are raising money for the charity by shopping online with @easyuk. Every time you shop, the retailer gives us a free donation. All these tiny amounts can add up to quite a sum at the end of the month and really make a difference to our finances.

Plus – when you sign up and raise your first £5 in donations, @easyuk will give us a bonus £5 donation.

Please sign up and raise today.

Thank you

Sign up here

Please don't forget us

The Nystagmus Network relies entirely on membership subscriptions, the generosity of your donations and the hard work of our fabulous fundraisers. We cannot continue our work without that financial support.

Gifts in wills are particularly valuable to a tiny charity like ours. 
We understand that provision for family, friends and loved ones must always come first. All we ask is that you remember us, too.

Your lasting gift could make a huge difference to the nystagmus community. It might help us fund that elusive piece of research which leads to a cure for nystagmus. That would be quite a legacy, wouldn't it?


Please remember us in your will

Sign up for Gift Aid today! 

Did you know that for every pound you donate to the Nystagmus Network and for every pound of your annual membership subscription, we can claim an additional 25p back from the UK government, provided you are a UK tax payer? Already donated? You can still sign up today to help us claim your tax.

This means a huge amount to a small charity like us and costs you absolutely nothing.

You can sign up to Gift Aid by clicking the link below. Thank you.

Please sign up for Gift Aid here

Please consider making a donation 

The Nystagmus Network relies entirely on membership subscriptions, fundraisingdonations and gifts in wills 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.

You can unsubscribe from Focus

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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