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In the run up to the festive season, we're letting everyone know how nystagmus affects the many children we support, so that more people will understand what nystagmus is ...
... this Christmas.

Read more here

 

Raising awareness of nystagmus
and the work of the charity

From now until Christmas we'll be sharing messages across our social media about nystagmus and how it affects people, especially young children. We're also making people aware of the work the Nystagmus Network does.

Focus readers can join us by sharing our posts with your contacts whenever you see them on Facebook or Twitter.

Read more here

Order your Nystagmus Network Christmas cards today!

Designed by Ben and Charlotte, Jack and Lilly, our lovely Nystagmus Network Christmas cards are now available from our online shop. Complete with envelopes you can order multiples of 4 or 10 cards and help spread the word about nystagmus this Christmas.

Order your Christmas cards here

Take the Nystagmus is ... quiz!

Our quiz is designed to help you find out how much you know about nystagmus and the work of the Nystagmus Network.

Help us by sharing this link to the quiz with all your friends, family and colleagues.

Thank you!

Take part in the quiz here

Send Nystagmus Network e-cards this Christmas

Did you know that you can now send a Nystagmus Network e-card to all your friends and family this Christmas? 

Our e-card is exactly the same jolly design (by Ben and Charlotte, Jack and Lilly) as the real cards you can buy in our online shop. The only difference is that you don't have to post an e-card! We do that for you, by email!

All we ask is that you make a donation equivalent to the cost of actual cards and all those stamps.

Thank you!

Click here to send e-cards

 

Still to come in this issue of FOCUS

  • Calling Manchester - we set up our first local nystagmus network
  • Join Team Nystagmus Network for the Eye to Eye Walk
  • Nystagmus patient info day at Moorfields - Saturday 24 November
  • We publish our Annual Report 2017
  • They did it - Nystagmus Network trustees complete the abseil

Calling Manchester

We're about to launch our very first local nystagmus network in Manchester. Your host, Nystagmus Network trustee, Marie Turnbull, is arranging a date, time and venue for your first get together. If you'd like to come along, please email us at info@nystagmusnet.org. Thank you!

Contact us about Manchester here

 

Walk Eye to Eye for nystagmus research 

Please sign up to walk Eye to Eye in March 2019 to raise money for nystagmus research at Moorfields Eye Hospital and UCL.

Choose either the 4 or 14 mile route between the London Eye on the South Bank of the Thames and the iconic eye sign outside Moorfields Eye Hospital.

Join Team Nystagmus Network for the walk to make sure that every penny you raise in sponsorship goes directly into ground-breaking nystagmus research.

We'll be setting off at 11am on Sunday 10 March. Bring the family, bring the dog!

It'll be be the biggest nystagmus get together of the year!

Sign up here

 

Moorfields Nystagmus Patient Information Day

Moorfields Eye Hospital is holding an information day for adults with nystagmus since childhood on Saturday 24 November, 10.30 am to 4pm. 

The Nystagmus Network's Sue will be there!

The day will involve:

  • An overview of nystagmus and current management
  • A patient journey
  • Interactive discussion focusing on the needs of the patient
  • Talks from Visual Impairment and Low Visual Aids teams

Lunch and coffee will be provided and places (free of charge) will be allocated on a first come, first served basis.

Booking closes: Friday 16 November

Book your free place here

 

We publish our Annual Report 2017

The Nystagmus Network Annual Report 2017 is now available to read in full on the Charities commission website. The headline figures are:

  • 265 families and individuals received personal support, information and guidance from staff
  • 75 families benefited from our education advocacy service
  • around £12,000 invested in 3 nystagmus research projects, with a further £30,000 to be spent on research in 2018

All this was made possible thanks to the support of our members, supporters and especially our fundraisers, including 5 marathon runners, our very first sky dive and a rickshaw ride across India. Together they raised £51,485.

Thank you to everyone who contributed to a truly fantastic year!

Read the full report here

 

Could you do this for nystagmus?

Nystagmus Network trustees Claire Brinn and Vicky Pitman and Vicky’s husband, Richard finally completed their abseil for nystagmus research on Sunday, 28 October.

 

The Nystagmus Network is indebted to all 10 of our abseilers who are all now safely back on the ground: Claire A, Claire B, Glen, Matt, Richard B, Richard P, Tom, Vanessa, Vicki and Vicky. Together they have raised around £7,500 for  nystagmus research at Moorfields and UCL.

Read the full story here

Christmas is just around the corner!

When you do your online shopping through easyfundraising, you'll be helping to raise donations for The Nystagmus Network. Please sign up and start shopping through easyfundraising today to help us reach our goals. It's fundraising for free!

Sign up here

Make us smile - even more!

Thank you to everyone who’s already signed up with AmazonSmile to raise a small donation for the Nystagmus Network every time you order something from Amazon.

For a short time you can generate 10 times the donations to us when you shop on smile.amazon.co.uk.

Until 2 November, AmazonSmile is increasing donations to 5%.

Make us smile here

 

Sign up to our lottery!

Did you know that for as little as £1 per week you could be in with the chance to win £25,000? You could, if you sign up to the Nystagmus Network lottery.

Sign up here

Please don't forget us

The Nystagmus Network relies entirely on membership subscriptions, the generosity of your donations and the hard work of our fabulous fundraisers. We cannot continue our work without that financial support.

Gifts in wills are particularly valuable to a tiny charity like ours. 
We understand that provision for family, friends and loved ones must always come first. All we ask is that you remember us, too.

Your lasting gift 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 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? Already donated? You can still sign up today to help us claim your tax.

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

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.

You can unsubscribe from Focus

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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You can read all our back numbers in the online archive.

 

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