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Have you got your ticket?

The Nystagmus Network's annual Open Day is the biggest UK nystagmus event of the year. It's your chance

  • to ask nystagmus experts all your burning questions
  • to hear from nystagmus 'heroes' and 'survivors'
  • to meet other people who have nystagmus!

If there are at least 67,000 people in the UK who have nystagmus, how come we rarely meet anyone else?

That all changes on 29 September when you get to talk to 200 people who either have nystagmus themselves or know someone who does.

For one whole day you don't need to explain your wobbly eyes!

Get your ticket here

 

Join the Team Nystagmus Network abseil!

The Nystagmus Network is partnering with Moorfields Eye Charity to offer you the opportunity of a lifetime, to abseil down the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park, London to raise money for nystagmus research at Moorfields Eye Hospital and University College London.

Do you have what it takes to raise money for pioneering nystagmus research?

We now have 5 abseilers all signed up to take the leap for nystagmus. Do you want to join them?

Sign up here

 

Tickets on sale!

For the past month, Nystagmus Network members have been enjoying the privilege of priority booking for their free places to this year's Open Day. The remaining tickets are now on general sale. They won't hang around for long, so, if you want to join us in Birmingham, book your place today!

Member booking is now closed, but if you're a member and you haven't yet booked your free place, please email us at info@nystagmusnet.org.

Open Day ticket holders will receive full details of the agenda, speakers and all activities planned.

Book your ticket for Open Day

 

UK nystagmus Research conference 2018

The Nystagmus Network is hosting a nystagmus research conference later this year. Delegates are senior researchers, academics and clinicians from the top UK nystagmus research centres, with expertise in testing and diagnostics, genetics and technological intervention. We will also be joined by a representative from Fight for Sight, our research funding partner.

Agenda items include an exploration of further collaboration opportunities between centres to ensure that teams are working together to maximise results, overcoming the challenges of the next 5 years in respect of resources and funding and a session on blue sky thinking.

In the words of one senior researcher: “Prevention is still a way off, but we will get there. That’s why I’m here.”

Read all our research news here

 

Still to come in this issue of FOCUS

  • Shape the future of education for children with nystagmus
  • Twins appeal - do both identical twins have nystagmus?
  • Explaining nystagmus to a child

Shape the future of education support

Nystagmus Network volunteer education advocate and trustee, Frances Lilley, is a member of a group called the Young Vision Alliance. The Alliance is researching the difficulties children and young people are facing in education prior to an education campaign later this year which will be calling for the government to address key issues.

You can help Frances and the Alliance by taking part in a short survey. It should take only about 10 minutes to complete.

The survey is for

– children and young people with a vision impairment who live in the UK and are either in school or college or have left within the past 2 years

and

– parent(s) of a child or young person with vision impairment who is currently in school or college.

The survey is open until Friday 10 August.

Take the survey today!

Twins appeal

Here at the Nystagmus Network we often hear from people who are twins or parents of twins. Sometimes both twins have nystagmus, but sometimes only one of them does. This got us wondering. When twins are identical, do both twins have nystagmus? If not, why not?

Nathan and Joshua are identical twins, seen here playing together on the beach. They both have nystagmus, but the prescriptions for their glasses are different.

Are you an identical twin or the parent of identical twins? Do both twins have nystagmus? 

Contact us about twins

Explaining nystagmus to a child

Sadly, the Nystagmus Network hears often from people whose children or grandchildren have been called names or sidelined because of their nystagmus. It  happens to adults, too. The latest incident was a little girl on holiday this week.
This is why we published our booklet for children, 'Wobbly Eyes'. It helps explain nystagmus to a child and also gives them the words to talk to other children about their eyes, which we hope will prevent some of the bullying.

Download Wobbly Eyes

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? This means a huge amount to a small charity like us and costs you absolutely nothing.

We have paper and electronic Gift Aid forms. So please contact us today to make sure you're signed up to Gift Aid. Thank you.

Please contact us about Gift Aid today

Please consider making a donation 

The Nystagmus Network relies entirely on membership subscriptions, fundraising, donations 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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