Delilah's story for Jeans for Nystagmus Genes

All seemed well when Delilah was born. But when she was around 4 months old, her mum, Sarah noticed her daughter’s eyes were moving around randomly.

‘I had no comprehension what it was, but when I spoke to family members they said it was just a baby’s development and she was trying to focus,’ says Sarah.

‘But my mother’s intuition told me to check it out. So we went to the local children’s centre to see their ophthalmologist a couple of months later and they said she had nystagmus.’

Read Delilah's story here

Hold the front page

Deliliah and her family made the front page of their local newspaper, the Glossop Chronicle, with their 'Denim for Delilah' story.

Parents, Sarah and Rob are both generous supporters of the Nystagmus Network and have done more than their fair share of fundraising.

We are grateful to them for helping us bring nystagmus into the public eye as a genetic condition.

 ‘She is a rocket and does everything at 100mph’

Sarah is full of joy at her daughter's fearlessness. 

'Who knows where we’ll be in the future', she says, 'but right now, nothing stops Delilah. ‘She loves dancing, drawing and singing and is really energetic and outdoorsy. She also loves princesses!’

Read Delilah's story here

Annual General Meeting


All members of the Nystagmus Network have been given notice that the AGM will be held at The Millennium Lounge, The Principality Stadium, Westgate St, Cardiff CF10 1NS on Saturday 28 September 2019 at 15.20 as part of the Open Day programme. 

Members unable to attend the meeting may exercise their right to vote by proxy.

AGM details here

Open Day 2019 programme

We've published our programme for Open Day 2019 in Cardiff. It's going to be a very busy day!
Download your programme 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.

We're well on the way to raising our first £1,000! Just think what we could do with that!

It's fundraising for free!

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. 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.

You can unsubscribe from Focus

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 issue of Focus is for all our subscribers, including our members. 

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.

Missed any issues?
You can read our back numbers in the online archive.


Welcome to all our new readers!

Unsubscribe from this list
Copyright © 2019 Nystagmus Network, All rights reserved.

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp