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Make the most of the summer. Simon has!

The Nystagmus Network has lots of great ideas to keep you busy this summer and make sure you're ready for the new season ahead.

So whether you're holidaying abroad or enjoying a staycation, please take some time out to think what you could do to help support your favourite charity through the long winter months.

Simon returned from a family holiday yesterday and completed his Nystagmus Network sponsored sky dive this morning!


Well done, Simon!

Want to sky dive like Simon?

 

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

Sign up here

 

Tickets on sale today!

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. Today's the day when the remaining tickets go on general sale. They won't hang around for long, so, if you want to join us in Birmingham, book your place today!

Any member who hasn't yet booked their free place, can email us at info@nystagmusnet.org.

Book your ticket for Open Day

 

James and Thomas's summer challenge

James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart.

James (8) and Thomas (5) have decided to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and the Nystagmus Network. That's an average of 3.8 miles per day to reach their target.

James has Nystagmus. He also has a very rare genetic disorder called Chromosome 18q-23 distal deletion syndrome. At least 1 in 1,000 babies are born with nystagmus. Chromosome 18q- affects 1 in 55,000 births. Having both is super rare!

So that Chromosome 18 Registry and Research Society Europe and the Nystagmus Network, two tiny charities, can continue to offer support to families just like James’s, please sponsor the boys today.

Sponsor James here

 

Help with your taxes!

Did you know that RNIB has a tax team that supports blind and partially sighted people with tax, tax credits and HMRC issues across the UK?

The team, based in Liverpool, is supported by HM Revenue and Customs (HMRC). Mark Rogerson from RNIB’s Tax Advice Service told us how the team makes a difference to the lives of blind and partially people.

Find out more here

Well done, Harry!

Harry and his family raised over £1,000 for the Nystagmus Network last weekend by taking part in a sponsored fun triathlon. What a phenomenal achievement!

Say thank you to Harry

Free resources for teachers and parents

The school summer holidays may have only just begun, but for teachers this is the time they think about preparing all those courses and lessons for the new school year.

The Nystagmus Network understands that teachers want to be particularly geared up to support children in their class with nystagmus. That’s why we’ve produced our Teachers Booklet, full of simple hints and tips to make sure that learning is accessible for visually impaired pupils.

Here’s what one teacher says about our booklet:

“I’m about to have a child in my class with nystagmus and have been given the booklet for teachers by his parents. I’ve found it extremely helpful and clear in my preparation for the year ahead. Thank you.”

Download your copy today

Seeing beyond ... a survey

The Nystagmus Network has teamed up with training organisation, Visualise, to ensure that everyone involved in testing people’s eyesight is nystagmus aware.

You can help make sure that all optometry clinics and practitioners are up to speed, by taking part in this survey.

Thank you!

Take the survey

Sign up to Easy Fundraising for free donations 

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 are signed up to Gift Aid. Thank you.

Please sign up to Gift Aid today

Please consider making a donation 

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