Tag: David Katz

A view of a street scene at sunset.

Wilson’s winning window

We are delighted to announce that 16 year old Wilson is the winner of our Nystagmus Awareness Day photography competition: The View from my Window.

Wilson is very pleased to have won a competition he didn’t even know he’d entered. Each evening Wilson sends home to his Mum a photograph of the view from his bedroom window at school. His Mum was so touched by the thought and Wilson’s beautiful photos that she entered one of them secretly in the competition and Wilson has won.

All entries were from adults and children were judged by internationally acclaimed photographer, David Katz.

David said: “It was a real honour to be asked to judge these wonderful pictures by fellow VI photographers.

‘The images were fantastic and show that VI photographers can take great shots just as well as anyone else. It’s not about how far we can see, it’s about what we see.

‘The image I have chosen shows that perfectly in every way.

‘Much respect to all those who entered.  Practice makes perfect. And huge congratulations to the photographer of the image I have chosen.

‘No Such Word As Can’t.”

Wilson wins a Nystagmus Network T shirt.

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.

The Nystagmus Network logo and the words nystagmus research

Your nystagmus research questions answered – question 9

We asked a group of Nystagmus Network supporters what questions they would most like to put to nystagmus researchers. Then we found researchers to answer them.

Your questions were answered by Jay Self (JS), a Consultant Paediatric Ophthalmologist at University of Southampton and nystagmus researcher and Helena Lee (HL), a Consultant Ophthalmologist at University of Southampton and a nystagmus researcher.

Question 9: How can we best improve the quality of life for those with nystagmus?

(HL) Empowering patients and their families, making sure they have the information they need to understand their condition and that needs to be passed on to their schools or their employers on how best to optimise their circumstances. These are all little things that don’t require a pill or a prescription, but make a big difference. If, say, a child is put into the right place in front of the whiteboard for their null point or given extra time or things are blown up or they’re given an i-Pad. All these little things make a big difference before we prescribe anything or do anything else.

Then there are little things like optimising your glasses, making sure they’re the best they can be, with tints if you need them or checking your vision in the dark if you have a retinal dystrophy, or checking whether bright light makes a difference. It’s actually about understanding all those little things. Then you can get on to other things like contact lenses, surgery for null point if necessary, trying treatments such as the ones we try for acquired nystagmus and for congenital nystagmus. Sometimes there’s prism treatment. There’s quite a lot of stuff that can be done in your local clinic that doesn’t require anything very special, but just requires understanding of the condition.

(JS) I would agree. A lot of it boils down to information sharing support and also doing all the normal stuff in a timely way. I totally agree with the glasses correction. It’s easy to put that to one side when people are stressed about getting the genes tested. You’ve got to do all the normal things we do in a timely way and in a bespoke, sensible way.

A final thing is a massive thing that the Nystagmus Network can do, which they have been doing for the last few years, which is really celebrating good news stories, which I don’t think was a massive focus a few years ago. If you speak to David Katz or Richard Osman they almost say that ‘nystagmus made me,’ ‘it’s made me do the things I’m doing and it’s actually given me super powers.’ You cannot push that message too much, especially when you’ve got new mums with little babies and they think it’s the end of the world.

The Nystagmus Network is enormously grateful to Jay and Helena who gave up their time on a sunny Saturday afternoon to answer questions from the nystagmus community so openly and fully.

Our wobbly photography competition – judged by David Katz

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 (pictured).

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 we asked him to judge our 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.

Email your entry to [email protected] 

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.

Good luck, everyone!

David’s amazing Open Day film

We were so lucky to have the inspirational David Katz as our guest speaker at Open Day 2018. Not only did he deliver an amazing presentation, but he was around all day chatting with delegates and supporting Maayan with her Movement and Spirit workshop for the children.

If you weren’t able to come to Open Day this year, David’s short film will give you a flavour of what you missed. Enjoy!

Watch the film here.

An inspiring meeting with David Katz

The day before Nystagmus Awareness Day 2018, Information and Development Manager, Sue, and trustee, Peter, travelled to London to meet a very inspirational man – internationally acclaimed ‘blind’ photographer, David Katz. Several exciting nystagmus-related projects were discussed – more of those to come.

David will, of course, be the charity’s guest speaker at Open Day in September, bringing us stories of his long and illustrious career in photography, the experience of making his film, Through my Lenses, and, most recently, his assignment of a lifetime to the PyeongChang Winter Paralympics.

Did you come to Snow Camp?

It was a fantastic event. There were so many amazing people there to inspire adults and children to get out on the slopes and enjoy the snow. David Katz was there, sharing stories of his amazing photography career, despite having ocular albinism and nystagmus. The Outspan Rebels VI ski team were there, with their amazing Head Coach, Charlotte Evans MBE … and Menna and Jen were there, fresh from their medal success at the Winter Paralympics in PyeongChang.

It truly was a fabulous start to ‘Wobbly Week’ 2018. Huge thanks to Jamie Fuller for making it all happen – on Father’s Day!

We have another Snow Camp coming up on Sunday 15 July. Please contact us, using the form below, if you’d like to come along.

 

 

Open Day tickets for members – available soon

Tickets to the biggest UK nystagmus event of the year will soon be available to book. Subscribed members of the charity will be able to book their priority free tickets to our annual Open Day from 12.00 midday on Thursday 26 June. Members will be notified with details of how to book their places by email or post.

Any remaining tickets will go on sale on a first come, first served basis to non-members from Thursday 26 July at £27 per adult, £10 per child.

David Katz – our special guest speaker at Open Day 2018

We are delighted to announce that David Katz, the internationally acclaimed photographer, will be joining us as our special guest speaker at our annual Open Day on 29 September.

David was with us all in spirit last year, of course, when we were honoured and privileged to have been granted permission to premier his amazing film, Through my Lenses. In the film David reveals that, throughout his success behind the camera, he managed to conceal the fact that he is actually registered blind. He speaks personally and very movingly about his upbringing, the gift of a first camera from his father and the support from his mother, in particular, who taught him a lesson that will stay with him for life – there is no such word as can’t.

David is currently enjoying yet another official photography assignment, one which we know will hold a very special place in his heart. He is in Pyeongchang, covering the Winter Paralympics.

We look forward to seeing David, again, in Birmingham on 29 September.