How amazing is Freya?

I was born with nystagmus and always struggled at school both in the classroom and in PE. All throughout my education it’s been a continuous trip to the printer to enlarge text books and print outs. Things didn’t really change at college. I was told I had dyslexia which could be linked to the nystagmus, because of the way my brain is seeing the words. I was offered support sessions to look at alternative methods of learning. I then went on to university and this year I am graduating! I have studied law for the past three years and in September will be going on to train as a barrister. I anticipate many challenges due to nystagmus such as mock court situations. Reading facial expressions and looking at evidence may be challenging, but nystagmus won’t stop me.

 

 

You could win £450 for the Nystagmus Network

SMALL CHARITY WEEK begins on Monday 18 June. If the Nystagmus Network is your favourite small charity, why not enter the Facebook, Twitter or Instagram competition to help us win £450?

How to enter:

Take a photo of yourself holding up your Small Charity Week poster that reads:

“I love Nystagmus Network because (and say why you love the charity)”.

Then simply post it to either Twitter, Instagram or the Small Charity Week Facebook page, depending which competition you want to take part in. Make sure you include the #ILoveSmallCharities hashtag when you post your photograph.

Thank you for your support in SMALL CHARITY WEEK!

You can download your poster here.

Nystagmus Network article published

To achieve our objective of raising greater awareness of nystagmus, the charity publishes articles from time to time on different aspects of the condition. The article we submitted for publication most recently is entitled Wobbly Eyes and explains nystagmus in language a young child can understand. The text is adapted from our free to download publication with the same title. Download your copy here.

Nystagmus in the open and the Big Blind Walk

On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk?

On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 John O’Groats Trail. If you can be there to cheer him on, please let us know and we will send you a free Nystagmus Network T-shirt to wear.

Julian is walking to raise £300,000 for sight research. That will be good for all of us. He deserves our support.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

People stand at a clinic reception holding Nystagmus Network balloons.

Nystagmus Awareness Day – for clinics

Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world.

We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template.

For those organising a fundraising event, we also have posters – and don’t forget your bunting!

If you would like some leaflets or postcards to take into your eye clinic the next time you visit, or some balloons, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Children sit around a mat interacting with their teacher.

Nystagmus Awareness Day – for schools

Schools can take part in Nystagmus Awareness Day, especially if there is a pupil who has nystagmus. Talking about nystagmus, celebrating ‘nystagmus in the open‘ will help us raise awareness of the condition and help the children affected explain it to their friends. This can help remove the sense of isolation some children feel. We have a free to download PowerPoint presentation, perfect for assemblies and form time, a Lesson Plan and our special booklet for children, Wobbly Eyes. If you would like some balloons, please contact us.

If you would like to help us fundraise on the day, with a bake sale, fun sports or non-uniform day, you can publicise your ‘nystagmus in the open‘ event with one of our free flyers. There is even a template, so that the children can make their own bunting. They are all free to download.

Thank you for your support, from everyone in the nystagmus community.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus in the garden

To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting!

Sue and her husband have been members of the charity since their daughter was diagnosed with nystagmus in 1991, during the first few weeks of her life. Sue has served as a trustee, volunteer parent adviser and is now an employee.

If you can’t make it to Sue’s garden, please consider making a donation to her Justgiving page instead. Thank you.

If, like Sue, you would like to open your garden for Nystagmus Awareness Day, you can download a free poster or flyer. For more details about this ‘nystagmus in the open‘ event or for advice on how to organise your event, please call Sue on the charity information and support line: 01427 718093.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Every Wednesday is Nystagmus Awareness Day on Facebook

We started national and international Nystagmus Awareness Day, also known as Wobbly Wednesday, back in 2013. But every Wednesday is awareness day on our Facebook page.

This means you can talk about any aspect of nystagmus you choose and ask any questions you like. This is your forum to talk about everything to do with nystagmus.

We will, of course, be celebrating the actual Nystagmus Awareness Day later in the year. See today’s further blog post for exciting news about this year’s theme!

Nystagmus Awareness Day 2018

The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day.

Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.

In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.

To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.

Please watch our blog and social media posts for further news.