David addresses delegates


Thank you! You were amazing!

Nystagmus Network trustees and staff would like to say a huge thank you to everyone who helped make Open Day 2018 such an amazing day: to our fabulous guest speakers, Marsha and David, to our researchers and clinicians, to our presenters and exhibitors and most of all to our wonderful delegates.

Read more here

Marsha chats with families


The UK Nystagmus Research Meeting 2018 

Researchers and clinicians from Cardiff, London, Plymouth, Sheffield and Southampton met on Friday 28 September to plan the way ahead for nystagmus research. Our medical experts were joined by charity trustees and our funding partners, Fight for Sight.

The half day conference, hosted by the Nystagmus Network, took place in Birmingham ahead of the charity’s Open Day 2018.

Read more here

Three new joint research grants announced

On Friday 28 September the Nystagmus Network were delighted to announce that they would be funding 3 new nystagmus research projects jointly with their funding partners, Fight for Sight.

In total £30,000 in funding will be used for projects bringing benefits to children and adults living with nystagmus.

Read more here


Still to come in this issue of FOCUS

  • we launch our Education Resource HUB
  • join the Eye2Eye walk
  • play our lottery to win £25,000
  • design our 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


Join the Eye2Eye walk in 2019

In partnership with Moorfields Eye Charity, the Nystagmus Network is recruiting a team to take part in the Eye2Eye walk from the London Eye to the iconic eye on the front of the Moorfields Eye Hospital building. The walk takes place on Sunday 10 March 2019 and you can choose to walk 4 or 14 miles. Bring the children, bring the dog! Have a great day out and help us raise lots of money for nystagmus research at Moorfields and University College, London. To apply, please email us at or call 01427 718093.


Contact us about Eye2Eye here


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

Design our Christmas card

At Open Day we announced our competition for children to design the Nystagmus Network 2018 Christmas card. Cards will be available to purchase from early November and will help us raise much needed funding for the charity.

Ben and Charlotte, Lilly, Jack and Rowan are our current front runners, but there’s still time for you to enter your design.

Competition details here

Are you signed up?

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.

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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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