Parent Power – our new project, funded by the National Lottery Community Fund


The Nystagmus Network is delighted to announce that we have been awarded funding by the National Lottery Community Fund for a brand new project, called Parent Power.

The aim of the project is to empower parents and carers to advocate for their children with nystagmus to ensure they access appropriate educational support in school or early years settings and achieve their potential.

We're very excited about our project and extremely grateful to every National Lottery player for the funding.

Read about Parent Power here

Sharing all your nystagmus success stories

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

We've shared Ben, Calum, Poppy, Hanna and Ursula's stories already. Read all the stories on our blog, here

Here’s another story we just had to share. Roger began by saying “I have enjoyed Nystagmus for nearly 80 years.” We were hooked. Roger went on to describe how nystagmus affects him and he wants to encourage others to do the same, so that everyone knows what it’s like.

What better way to raise awareness of nystagmus?

Read Roger's amazing story here

Still to come in this issue ...

  • Nystagmus Awareness Day events
  • VI skiing - new dates for the summer
  • International Albinism Awareness Day

Nystagmus Awareness Day - 1 week to go!

There are people doing parkruns for Nystagmus Awareness Day throughout the UK. There's a rumour that even Northwick Bear will be running!

There are quizzes, dress down days, dressing up days, cake sales, coffee mornings, walkathons, raffles and lots more in schools and workplaces, hospitals and clinics.

If you're in the Manchester area, please come along to the Manchester Royal Eye Hospital on Wednesday 19 June for lots of family fun. Details below.

Let's go VI skiing

With thanks to our friends, the Outspan Rebels VI ski team, we’re offering you the chance, once again, to try out skiing for yourself at Snozone Milton Keynes.

Children, young people and adults all welcome. Bring along your fully sighted family members, too.

The first session is on 30 June.

All enquiries, please, to

More details here

Don't miss your chance to come to Open Day

Members of the Nystagmus Network have been busy booking their free adult and child places for Open Day 2019. Places are filling fast.

Any remaining tickets will go on sale to non-members from Monday 1 July at midday. Prices will be £32 per adult, £10 per child.

It’s not too late to join. Any new members of the Nystagmus Network can still claim their free places. Why not join us today?

Full details of Open Day here

... and finally

We celebrate International Albinism Awareness Day TODAY with our friends from Albinism Fellowship.

A guest post from Roselle Potts

Roselle Potts, Chair of Albinism Fellowship writes: 

'The prejudice and struggles facing people with albinism are sadly as present as ever in 2019.

'International Albinism Awareness Day is with us again on 13 June and it’s a chance to reflect on the progress that has been made in recent years.'

Read the full post here

Thank you to our new Easyfundraising shoppers

Thank you to our amazing supporters for shopping online with Easyfundraising. Your support really does make a difference. Together we've raised over £800! 

It's fundraising for free!

Sign up here


Play the Nystagmus network weather lottery!

You could be our next £25,000 winner!

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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.

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.

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