The Nystagmus Network now produces a digital newsletter for Dispensing Opticians and Optometrists. The first edition has just been published, bringing nystagmus news, stories and information directly to high street and community practices.
Children’s writing workshops this summer
Did you miss the children’s online writing workshop with fabulous children’s author, Helen Rutter? What a shame. That means you didn’t get to hear all about Helen’s inspiration behind her book ‘The Boy Who Made Everyone Laugh’ and you didn’t get to meet her dog, Billy Whizz!
Never mind. There are two more workshops still to come.
The first is with ‘Secret Agent Striker’ author, Tim Pearce and the second is with children’s writer and illustrator, Claire Alexander, author of ‘A Little Bit Different’.
Meet Tim Pearce
Children aged 7 years and up are invited to join a FREE interactive workshop with Tim Pearce, author of Secret Agent Striker. Tim will share his passion for writing, his inspiration and what he plans to write about next. You can send your questions for Tim in advance to [email protected]
Monday 10 May: 4:30 to 5:30pm
Book the Zoom workshop with Tim here
Order Tim’s book on amazon Smile here
Meet Claire Alexander
The Nystagmus Network welcomes children aged 7 years and up to a FREE interactive online workshop with Claire Alexander, author of A Little Bit Different and her new book A Little Bit of Courage. Claire will share her passion for writing and illustration her inspiration and what she plans to write about next. You can send your questions for Claire in advance to [email protected]
Thursday 17 June: 4:30 to 5:30pm
Book the Zoom workshop with Claire here
Order Claire’s books on Amazon Smile here and here
Harry’s story for Raindrops
This is Harry. Harry is 9 years old. He’s just written his story for the Raindrops story writing competition. It’s about Raindrops and what they make him think of.
Well done, Harry.
We look forward to reading yours and all the other stories in the fabulous Raindrops story book to be published later this year.
Raindrops competition details here
Looking forward to 20 June
We’re launching something BIG for Nystagmus Awareness Day 2021
But first, a question. Who’s your favourite children’s author?
David Walliams? Eva Ibbotson? Onjali Rauf? Eoin Colfer? Malorie Blackman? Adam Blade? J K Rowling? Jacqueline Wilson?
Please contact us with the name your child’s or your favourite children’s author
THANK YOU
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.
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.
How amazing are you?
Don’t forget that, throughout June, in the run up to Nystagmus Awareness Day 2019, we’ll be sharing all your amazing nystagmus stories. So, if you’d like us to feature your success or achievement, or your child’s, or nominate someone you know, please send your story and photo to: [email protected].