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Thank you for your support


In these challenging times for all of us, we wanted to say a huge THANK YOU to our members, supporters and friends and celebrate how far we've all travelled together.

Thanks to you, this little charity has continued to grow from strength to strength since Vivien started it from her kitchen table back in 1984.

Without you there would be no state of the art website, with up to date information for everyone to download.

Without you we would not be able to run our information and support line every single day of the week.

Without you we would not have seen the enormous strides in nystagmus research. There’s still a long way to go, but the detail of diagnostic testing and accurate prediction of future vision available now are something Vivien could only have dreamed of when her son was diagnosed.

Thank you for always being there for us. We’re here for you now.

Stay safe and well everyone.
Watch Vivien's story here

Please read on for

  • an update on our latest research investment

  • Sue’s story of a compliment slip that changed her life

  • how to join in our virtual QUIZ NIGHT this Saturday at 7pm

Donate to nystagmus research here

Nystagmus Network research investment 2020 - 2021
 

An update of our post doctoral award

For those of you eagerly awaiting news of the outcome of 2019/2020 applications for the new post doctoral research project into nystagmus, jointly funded by the Nystagmus Network and Fight for Sight, we can now share with you the somewhat disappointing news that the project grant will not be awarded this year.

Instead the 2 charities will be funding a PhD studentship and a further small research grant.

This is positive news for the future of research, as it establishes a pipeline of work leading to breakthroughs into treatments for nystagmus.


We would like to say a particularly heartfelt thank you to our friends at Fight for Sight.

Read the full story here

30 years of nystagmus research - what a difference it has made
 

When my daughter was 6 weeks old a paediatrician told me she was blind. Just like that. No preamble. It was a devastating experience.

My GP confirmed what I already suspected. My daughter wasn’t blind, but she did have something wrong with her eyes.

She wrote the word nystagmus on a compliment slip and handed it to me. She couldn’t tell me any more. I had so many questions, but she had no answers.

I keep that compliment slip to this day as a reminder of how far we have all come. It’s what spurs me on to support other parents and raise awareness and understanding of this complex condition.

Since the early 1990s the Nystagmus Network has campaigned for and invested in nystagmus research ...

Read the full story here

This Saturday, 4 April at 7pm

Want to test your general knowledge?

Think you’re the brainiest person in the whole nystagmus community?

Now’s your chance to prove it! Join our virtual quiz night. It's fun and just a little bit competitive!

As well as the glory of winning there are cash prizes for 1st, 2nd and 3rd placed players.

Good luck, everyone!

Register here to take part

Make the most of your daily time outdoors

 

With marathons, half marathons, 10k and 5k runs postponed, there’s still lots of opportunity to take part in virtual runs and challenges right now.

Nystagmus legend, Sarah is doing just that. She's completing a marathon a month throughout 2020 and a world pandemic is not going to stop her. 


You don't need to run a marathon. The Local Landmarks Challenge is a solo, virtual run, around your local landmark. That could be anything from your local church, castle, park, statue or even post-box. You decide the distance.

You even get a medal when you finish!

Sign yourself up to take part and then set up your Justgiving page to collect your sponsorship for the Nystagmus Network.

Stay safe and healthy and enjoy your run!

Sign up for a virtual run here

Set up your Justgiving page here

More details here

Have you been on a bear hunt yet?

 

A great way to make your time outdoors fun with the children is to go on a bear hunt.

Inspired by the lovely Michael Rosen’s fabulous book “We’re going on a bear hunt” people all over the world are placing teddy bears in their windows so that children can spot them when they’re out walking with their families.

Nystagmus Network’s Sue says: This was one of my children’s favourite books when they were little. We never tired of it. Even today I sometimes tell my dogs we’re going on a bear hunt, but they haven’t caught any yet!”

The Nystagmus Network mascot (pictured) caught a very big one (also pictured) when he went on his bear hunt earlier today.

Michael Rosen is currently unwell. We wish him a very speedy recovery.

See Michael perform 'bear hunt' here

Ask us anything - we're here for you

 

Several people have been asking us "Does nystagmus or ocular albinism affect my immunity?"
We asked a clinical nystagmus expert. The answer is:
 

“IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity.

“There are some syndromic forms of albinism that are associated with immunocompromise and these patients would already be aware of this and/or have been notified by the UK government that they are in the vulnerable group.”

Contact us with your question here

Online learning resources

With so many online learning resources available, it can be hard to choose the best ones for children with nystagmus. The Nystagmus Network has put together a handy list of tried and tested online learning resources for parents and carers. It’s a list that’s growing day by day.

If you’d like to recommend a resource, please contact us and we’ll be happy to add it to our list.


For our most up to date recommendations, please see our Facebook page or blog.

Links to online learning here

Open all hours

Please remember that our online shop never closes. You can order your free downloadable documents, books,
T shirts, mascots and wristbands at any time

Visit our shop here

Our Facebook Groups - keeping you connected

Join our Facebook Parents’ Group here

The Nystagmus Network Facebook Group for parents of children and young people with nystagmus. Share your experiences of diagnosis, early years and education support.

Join our Facebook Adults’ Group here

A Nystagmus Network Facebook Group for adults living with acquired or congenital nystagmus. Share your experience of employment, sports and leisure, getting around and general day to day living.

Join our Facebook Friends’ Group here

A Nystagmus Network Facebook Group for our fundraisers, members and supporters.

To keep up to date with all our news and multiple posts daily, please visit

our Facebook Page

From entertainment packages to fitness equipment and more, you can still support the Nystagmus Network from home, by shopping online through #easyfundraising. Signing up is quick and easy and you’ll raise free donations for us every time you shop online. 

Please click below to get started.


Thank you so much!
Sign up here

Nystagmus Network weather lottery

Whether it's raining outside, snowing or blowing a gale you can get a warm feeling inside and the chance to win up to £25,000 every week for just £1 simply by signing up to the Nystagmus Network weather lottery.

The charity receives every single penny of the profits.

Please support us. Thank you.

Sign up for our weather lottery 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.

If you have any comments or would like to see your story included in a future edition of Focus, please contact us today.


Email: info@nystagmusnet.org
Phone: 01427 718093

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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 edition of Focus is for all our subscribers.

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Welcome to all our new members in 2020!

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