We just want to say a huge THANK YOU to everyone who supported Nystagmus Awareness Day 2019. Thank you for all your amazing stories, photos and video clips, for your fundraising events, for your donations and for all the cakes! Special thanks too, to all our parkrunners.

Thank you everyone - you truly are amazing!

Your nystagmus success stories

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

You can read all the amazing stories by visiting our blog or by clicking the links below.

Read Sonny-John's amazing story here
Read Ellen's amazing story here
Read Poppy's amazing story here

Still to come in this issue ...

  • Mike's amazing trek across New Zealand
  • Trustees discuss Parent Power with Marsha
  • parkrun for Nystagmus Awareness Day - in pictures
Visit Mike's wiggly walk website here

Mike's wiggly walk for nystagmus

On Nystagmus Awareness Day we were proud and delighted to announce that our newest supporter, Mike plans to walk the length of New Zealand to help find a cure for nystagmus.

The route he’s following is the Te Araroa pathway, taking in both the north and south islands, on foot and sometimes in a kayak, to raise funding for two charities close to his heart: Nystagmus Network and Gift of Sight.

Mike sets off on his walk in December. It will take him around 131 days to complete.

We are in awe of Mike's dedication and will be with him in spirit every step of the way.

Trustees discuss Parent Power with Marsha

On Nystagmus Awareness Day a group of Nystagmus Network trustees met with Marsha de Cordova MP.

Earlier that morning, Marsha had tweeted her own Nystagmus Awareness Day video message in which she asked us all to celebrate the amazing achievements of people with nystagmus and support and encourage our children and young people to achieve their potential.

Watch Marsha’s video message here.

Among the many topics discussed, trustees were able to tell Marsha about the charity’s brand new National Lottery funded project ‘Parent Power’ designed to provide parents and carers with the knowledge and skills they need to ensure that their children with nystagmus can access special educational support in school.

Read the full story here

Thank you to all our fabulous parkrunners!

A huge thank you to everyone who took part in parkrun and junior parkrun for Nystagmus Awareness Day at the weekend. Runners wearing Nystagmus Network T-shirts and vests helped raise awareness in Belfast, Cornwall, Derbyshire, East Sussex, Kent, Leicestershire, Lincoln, London, Manchester, Norfolk, Oxfordshire and Suffolk.

Open Day tickets on general sale Monday, 1 July

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

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!

Sign up 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.

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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