Copy

Nystagmus Awareness Day 20 June 20

 

  • How amazing are you?

  • Your 'wobbly' photography competition

  • A YouGov survey reveals - 82% of people have never heard of nystagmus

Nystagmus Awareness Day 20 June

Many of us are still staying at home, but here are just some of the ways you can get involved, virtually.

How amazing are you?

In the run up to Nystagmus Awareness Day 2020, we are once again sharing all your amazing nystagmus success stories on our Facebook page

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed.

Once again, there are some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus.

Email your amazing stories here

How amazing is Ollie?

Hi, my name is Ollie, I live in the UK and I'm 18 years old. I was born with congenital nystagmus. So far life has been great as I haven’t really known any different!

As a child my main problems were seeing people from a distance calling my name, and seeing the board at school. But people are really accepting of my condition and I don’t feel left out.

I'm studying sport at college and yes, catching a ball can be very challenging and frustrating! But I try my very best and persevere with it. I never let my nystagmus get in the way. I can ride a bicycle, I do gymnastics, trampolining, I also have a black belt in Tae-Kwon-Do! I used to do a bit of boxing as well.

My eye sight is just at the legal limit to drive, but I am very apprehensive whether or not I should. I would say to any parents or carers: Wait until your child is 17 and see how good their eye sight is, there is always hope! And if they can’t drive, it's not the end of the world. I can get around by myself (day and night) and I can be independent.

My message really is: Don’t let nystagmus stop you doing things. Give it a go and see what happens! And remember: we aren’t just different, we are unique!

Help support more amazing people like Ollie

Our wobbly photography competition

With the theme: The View From My Window, entries are already flooding in. We are delighted to announce that none other than internationally acclaimed 'blind' photographer, David Katz has kindly agreed to be our judge.

When we asked him, David said “I would be absolutely delighted and very honoured to judge the Nystagmus Network competition … It has constantly amazed me since making my story public how many of us with VI are into photography.”

Whether you have nystagmus or not, whether you have the latest camera or just a phone, and wherever you are in the world, you can take part.

Photographs must be your own work, be taken from a window at your home, in high resolution, copyright free and in landscape format. They should not show any people.
Email your entry to info@nystagmusnet.org 

Nystagmus is 

A fabulous new publication, Nystagmus is … a guide for adults, inspired by the wonderful Roger (pictured), is now available FREE from our online shop. The booklet is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time you can read what it’s like to have nystagmus by the people who really know.

When we shared an advance copy of Nystagmus is ... with Roger, earlier this week, he said:

"It’s fabulous and should open up a whole new understanding of vision disability awareness and training. I am proud to have been part of it and proud that you took up the challenge of getting and sharing your members’ feedback."

Order Nystagmus is ... here

Our wobbly quiz - Saturday 20 June, 7pm
 

The Nystagmus Network is running a Virtual Quiz every Saturday at 7pm. The quiz lasts just 20 minutes and includes rounds on general knowledge, sport, film and TV and music, with cash prizes for the top 3 scorers.

The proceeds are helping us continue to provide our support and information services.

On Nystagmus Awareness Day, 20 June, the quiz promises to be our biggest and best yet. There are cash prizes for 1st, 2nd and 3rd places.

So what are you waiting for? Get signed up now!
Register here to take part

Home school for Nystagmus Awareness Day

We have loads of teaching and learning materials available to help mark Nystagmus Awareness Day. There are posters to colour, bunting to make, a PowerPoint presentation, a lesson plan and our booklet especially for children ‘Wobbly Eyes”.

Download your free materials here

Thank you for supporting Nystagmus Awareness Day 2020


Here's why we do it ...

82% of people have never heard of nystagmus

If the results of a recent YouGov poll are anything to go by, we still have a long way to go in raising awareness of nystagmus.

The Nystagmus Network commissioned a YouGov survey in May 2020 to see how aware the UK population is of nystagmus. The survey was free of charge, thanks to a competition, run by the Small Charities Coalition of which the charity is a member.

Please see our report which highlights a common misconception about people with nystagmus and the reason why we will never stop raising awareness.

Read the report here

Albinism Awareness Day - 13 June

Mums and Dads of young children with albinism will receive a welcome boost this Albinism Awareness Day as the Albinism Fellowship UK launches baby boxes for families. Charity CEO, Roselle Potts explains ...

Read more here

Ask us anything - we're here for you.

Contact us with your question here

Stay connected with our Facebook Groups

 

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

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 edition of Focus is for all our subscribers.

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 members!

Unsubscribe from this list
Copyright © 2020 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