Dear Member

We hope that you, your friends and family are all safe and well. Please rest assured that our support and information services continue in these challenging times and that we are here to help you in any way we can.

Please read on for news of our quiz night this Saturday, a fundraiser you can do as part of your daily exercise outside, important information about immunity, online learning resources for children and to take our member survey.

Business as usual, but ...

Whilst we continue to offer our services, we fear that our income from fundraising will be seriously depleted this year. Major events, such as the London Marathon and our Ultra Challenges are either cancelled or postponed, schools are likely to be closed during Nystagmus Awareness Day on 20 June and the coffee mornings, pub quizzes and raffles we rely on are unlikely to go ahead.

That's why we've come up with lots of ideas to help keep you and your loved ones active and entertained whilst supporting the charity.

This Saturday, 28 March at 7pm

Want to test your general knowledge?

Think you’re the brainiest person in the whole nystagmus community?

Now’s your chance to prove it!

As well as the glory of winning there are cash prizes for 1st, 2nd and 3rd placed players.

Good luck, everyone!

Sign up to take part

Make the most of your daily time outdoors


With marathons, half marathons, 10k and 5k runs postponed, there’s still lots of opportunity to take part in virtual runs and challenges right now.

Nystagmus legend, Sarah is doing just that. She's completing a marathon a month throughout 2020 and a world pandemic is not going to stop her. 

You don't need to run a marathon. The Local Landmarks Challenge is a solo, virtual run, around your local landmark. That could be anything from your local church, castle, park, statue or even post-box. You decide the distance.

You even get a medal when you finish!

Sign yourself up to take part and then set up your Justgiving page to collect your sponsorship for the Nystagmus Network.

Stay safe and healthy and enjoy your run!

Sign up for a virtual run here

Set up your Justgiving page here

More details here

We're here to answer your questions


Several people have been asking us "Does nystagmus or ocular albinism affect my immunity?"
We asked a clinical nystagmus expert. The answer is:

“IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity.

“There are some syndromic forms of albinism that are associated with immunocompromise and these patients would already be aware of this and/or have been notified by the UK government that they are in the vulnerable group.”

Contact us with your question here

Online learning resources

With so many online learning resources available, it can be hard to choose the best ones for children with nystagmus. The Nystagmus Network has put together a handy list of tried and tested online learning resources for parents and carers. It’s a list that’s growing day by day.

If you’d like to recommend a resource, please contact us and we’ll be happy to add it to our list.

For our most up to date recommendations, please see our Facebook page or blog.

Links to online learning here

Open all hours

Please remember that our online shop never closes. You can order your free downloadable documents, books,
T shirts, mascots and wristbands at any time

Visit our shop here

Member survey

Please take just a couple of minutes to answer our short survey about membership. Your responses will help us improve your membership experience and develop our services.

Thank you

Take the survey here

Our Facebook Groups - keeping you connected

Join our Facebook Parents’ Group here

The Nystagmus Network Facebook Group for parents of children and young people with nystagmus. Share your experiences of diagnosis, early years and education support.

Join our Facebook Adults’ Group here

A Nystagmus Network Facebook Group for adults living with acquired or congenital nystagmus. Share your experience of employment, sports and leisure, getting around and general day to day living.

Join our Facebook Friends’ Group here

A Nystagmus Network Facebook Group for our fundraisers, members and supporters.

To keep up to date with all our news and multiple posts daily, please visit

our Facebook Page

From entertainment packages to fitness equipment and more, you can still support the Nystagmus Network from home, by shopping online through #easyfundraising. Signing up is quick and easy and you’ll raise free donations for us every time you shop online. 

Please click below to get started.

Thank you so much!
Sign up here

Nystagmus Network weather lottery

Whether it's raining outside, snowing or blowing a gale you can get a warm feeling inside and the chance to win up to £25,000 every week for just £1 simply by signing up to the Nystagmus Network weather lottery.

The charity receives every single penny of the profits.

Please support us. Thank you.

Sign up for our weather lottery here

Please don't forget us

Remembering the Nystagmus Network in your will 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 £1 you donate to the Nystagmus Network and for every £1 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 back. We can backdate our claim up to 4 years.

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.

Read all our news first on our BLOG.

If you have any comments or would like to see your story included in a future edition of Focus, please contact us today.

Phone: 01427 718093

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Members of the Nystagmus Network receive a fortnightly digital newsletter directly into their inbox. We believe it's a great way to keep them up to date with all the latest nystagmus news, events and research participation opportunities.

This special edition of Focus is for our members only. 

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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Welcome to all our new members in 2020!

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