Tag: Nystagmus is …

The logo of the Nystagmus Awareness Day 20 June.

Nystagmus Awareness Day 20 June 20

Nystagmus Awareness Day – 20 June 2020

It’s national and international Nystagmus Awareness Day on Saturday 20 June 2020. We may all be staying at home this year, but we can still mark the day and raise awareness to ensure that the 1 in 1,000 adults and children living with nystagmus enjoys a greater understanding of their condition and a better quality of life as a result. Here are just some of the ways people can get involved.

How amazing are you?

In the lead up to the big day, the charity is running its ‘how amazing are you?’ campaign, sharing stories of adults and children who have achieved great things despite living with nystagmus, or maybe even because they do. These stories bring a great deal of hope and comfort to families where there is a new diagnosis of nystagmus. Anyone who has nystagmus can submit their story.

Our wobbly photography competition

We want to raise as much awareness of nystagmus as possible this year and make sure that everyone has a chance to take part, so we’re running our wobbly photography competition: The View From My Window

We know that lots of people who have nystagmus are also keen photographers. Most notably, of course, is internationally acclaimed photographer, David Katz.

David revealed only in recent years, in his film “Through my Lenses” that he has ocular albinism and nystagmus and is actually registered blind. Nevertheless he has enjoyed a stellar career in photography and has created some of the most iconic press images.

When the charity asked him to judge the competition, 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.

Nystagmus is …

 The charity launches a brand new publication, Nystagmus is …, inspired by 80 year old Roger, on Nystagmus Awareness Day 2020. The booklet is full of contributions from people, like Roger, who live with nystagmus, describing how they feel about it and how it affects their lives. For the first time people can read what it’s really like to have nystagmus by the people who really know.

Nystagmus is … will be available FREE from the charity’s online shop from 20 June 2020.

Why do we need Nystagmus Awareness Day?

The Nystagmus Network raises awareness of the condition every single day of the year, because they believe that the more people who know about it the better. It means that adults and children who have nystagmus will get the help, support and services they need in education, employment, health, mobility and leisure to be able to lead a successful and independent life.

The charity’s Information and Development Manager, Sue Ricketts says: “Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that the Nystagmus community is here and their voices need to be heard.”

Every time someone takes part in Nystagmus Awareness Day or tells someone what they’re doing and why, that’s one more person who understands what nystagmus is.

Every pound raised or donated helps the Nystagmus Network support research teams across the UK to investigate this hugely complex condition, to find better diagnosis, treatments and continue to work towards prevention and cure.

Ends

Notes to editors

Contact: Sue Ricketts, Nystagmus Network

Email: [email protected]

Tel: 01427 718093

Website:        https://nystagmusnetwork.org/nystagmus-awareness-day/

Facebook:      https://www.facebook.com/NystagmusNetwork/

Twitter:          https://twitter.com/NystagmusUK

Images and logos available on request

Nystagmus is a serious, lifelong, incurable form of visual impairment where the eyes constantly move uncontrollably, affecting focus and depth perception. At least 1 in 1,000 babies are born with nystagmus. Many other people acquire nystagmus beyond infancy and into later life.

The Nystagmus Network is a registered charity in England and Wales, number 1180450. Our charitable objectives are to provide support and information, to raise awareness and to fund research.

Roger stands in his garden.

Nystagmus is … a guide for adults

A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline his suggestion of asking people who live with nystagmus to describe it for others.

The end result of that project 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.”

Download your copy of Nystagmus is … here

Roger stands in his garden.

Nystagmus is …

In the run up to Nystagmus Awareness Day on 20 June, we published lots of your nystagmus success stories in our campaign “How amazing are you?”

One of the most popular stories was Roger’s.

When Roger first contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” He went on to describe how nystagmus affects him and that he’d really like others to do the same so that everyone knows what it’s like.

We thought: What better way to raise awareness of nystagmus? So we launched our competition ‘Nystagmus is …’

We received loads of entries which will feature in our new publication later this year. Meanwhile, we’d like your help in choosing the winning competition entry. Please vote in our Facebook poll, here or on Twitter, here.

We are hugely indebted to Roger for his inspiration. You can read his description of his nystagmus here.