A postcard to advertise virtual Open Day on 3 October, showing a selection of images of the highlights to come.

Booking now for Open Day 2020

The Nystagmus Network has a huge variety of presentations lined up for you at virtual Open Day 2020 on Saturday 3 October.

Enjoy inspirational presentations, research updates and find all the support and information you need, all from the comfort of wherever you are.

Everyone welcome!

Due to social distancing rules still in place, we have decided to go digital! This means that you can attend Open Day 2020 from absolutely anywhere, hear all the latest nystagmus news, get inspired and soak up all the support and information you need, in comfort and safety, wherever you are.

We can promise a stellar list of speakers and presenters, and some fun activities, too, brought to you on screen.

Book your ticket here

Presentations include:

For everyone

keynote speaker Joanne Roughton-Arnold, opera singer, founder of FormidAbility, soprano voice of Rising Phoenix and Nystagmus Network member
research updates by key nystagmus researchers from across the UK (The School of Optometry and Vision Sciences, Cardiff University; The Ulverscroft Eye Unit, University of Leicester; Moorfields Eye Hospital, London; Royal Eye Infirmary, Plymouth; Academic Unit of Ophthalmology and Orthoptics, University of Sheffield; University of Southampton and Southampton General Hospital
Special Education Needs support for children with nystagmus: an update on the legal position in schools in England and in Wales
an interview and readings with Claire Entwistle, author of ‘What seems to be the trouble?’
building resilience in young people with visual impairment, a session with a QTVI
getting the best from an appointment with a high street optician – an optician and a dispensing optometrist explain
DLA, PIP and nystagmus, guidance from the Nystagmus Network volunteer benefits adviser
student finances and support services for young people with nystagmus heading to university
exhibition of assistive technology

For parents

There will be a virtual parents’ forum.

For adults

There will be a virtual adults’ forum for people living with acquired or congenital nystagmus.

For children and young people

We’re planning some fun activities which will help our younger delegates make new ‘virtual’ friends as well as an exciting new account on Instagram.

Your virtual Open Day online quiz

Round off your day by taking part in the online quiz. Sign up to take part here.

Exclusively for members of the Nystagmus Network

The following elements of Open Day are open to members of the charity only. If you would like to enjoy full member benefits and privileges, please join us today. Annual subscription is £25.

Phone appointments

Members of the Nystagmus Network will have the opportunity to book timed telephone appointments with a benefits adviser or an education advocate throughout the day. Places will be limited.

The annual general meeting

Members will also be invited to the charity’s AGM.

Night in with the Nystagmus Network

The day will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests. Members registering for this event will receive a set menu to cook at home, purchase as a ready meal or order in, a Nystagmus Network cocktail recipe (alcohol free version included), entry to the Nystagmus Network virtual treasure hunt and a zoom link with joining instructions. Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.

Booking opened for members on 20 August 2020

Meanwhile …

Watch the highlights of OPEN DAY 2019 here.

Book here for Open Day 2020

Want to run a virtual marathon for the Nystagmus Network? You can! Here’s how.

It’s still possible to run a marathon this year. You’ve been keeping fit during lockdown. Your training continued on your daily time outside. All the big runs are cancelled, but … you can still run – on a virtual track with Strava.

Your run, how, where and when you want it – you can even take your time!

Want to run the virtual Great North Run for the Nystagmus Network?

You can! Here’s how:

Virtual Great North Run

Want to run the Edinburgh Festival Virtual Marathon Challenge for the Nystagmus Network?

You can! Here’s how:

Edinburgh Festival Virtual Marathon Challenge

Want to run the virtual 40th London Marathon for the Nystagmus Network?

You can! Here’s how:

London Marathon

Want to run the Brighton Marathon 2020 for the Nystagmus Network?

You can! Find out how, here:

Brighton Marathon 2020

Want to raise some sponsorship for the Nystagmus Network?

You can with Justgiving.

Set up your Justgiving page here

Keeping you connected

The Nystagmus Network is working hard to bring you closer together with other people living with nystagmus or with parents and carers of children and young people who have the condition.

We are now running online support groups for adults with congenital or acquired nystagmus and for parents and carers. You can join zoom chats or stay in touch by email until it’s safe for us all to meet up face-to-face again.

Find out about virtual groups here

The Nystagmus Network plans to set up a range of regional and local nystagmus networks as soon as it’s safe to do so.

We already have a vibrant local group in the Greater Manchester area.

If you’d like to join a local nystagmus network or volunteer to run one in your area, please contact us today.

Find out more about local groups here

Night in with the Nystagmus Network

The Nystagmus Network virtual Open Day takes place on 3 October, with presentations, workshops, forums and fun for everyone.

The day, full of support and information and everything nystagmus, draws to a close in the evening with the spectacular Night in with the Nystagmus Network, a virtual supper party with an amazing guest speaker.

Night in guests (members of the Nystagmus Network and invited VIPs) will receive a set menu to prepare at home, purchase as a ready meal or order in, the recipe of the Nystagmus Network Cocktail (with an alcohol free version) and your entry form to the Nystagmus Network virtual Treasure Hunt. From 7.30pm onwards you will enjoy the company of your fellow dinners and some special announcements along the way. Plus you will be entertained and inspired by your very special guest speaker, the fabulous Mike Larcombe.

Booking is open NOW.

The Nystagmus Network appeal page on the BBC Radio 4 website, showig a picture of Richard Osman and details of the appeal.

Missed the appeal? Listen again!

If you missed Richard Osman presenting the Nystagmus Network charity appeal on BBC Radio 4 at 07.54 this morning you can listen again now.

Listen again here

Make a donation to the appeal here

Huge thanks to Richard and to everyone for donating to the appeal. Your generosity will ensure that the charity can continue to support the nystagmus community.

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.

Richard Osman to voice Radio 4 appeal

The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal.

The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July.

Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity in this way. Although he enjoys a successful career, he explains that at school “I had to listen an awful lot”. He famously cannot use an auto-cue when presenting on TV and must commit everything to memory.

Hear Richard talk about the Nystagmus Network here

The charity is particularly thrilled to have Richard’s support with the appeal as he is something of a role model to children and young people who have nystagmus. They see him on TV and know that they too can achieve their ambitions if they work hard and get the support they need.

Richard’s success and high profile are also a source of great comfort to the many parents who worry what the future may hold for their visually impaired children.

The charity’s Information and Development Manager, Sue Ricketts says: “We are so pleased to have been awarded this opportunity to have a Radio 4 appeal. Many listeners will hear about nystagmus for the very first time from someone who lives with the condition himself. What better way to raise awareness?”

Every pound donated to the appeal will help the Nystagmus Network continue to support the children, adults and families living with nystagmus and provide them with the information they need to thrive.

The appeal will be broadcast on Sunday 5 July at 07.54 and at 21.25 and again on Thursday 9 July at 15.27 on BBC Radio 4

DAB BBC Radio 4
FM 92 – 95 FM, 103-105 FM
LW 198 Long Wave.

Picture of Richard Osman courtesy of Penguin Books

Please click here to donate to the appeal – thank you

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.

Sold out

Thank you to everyone who sponsored Sue to knit 26 nystagmus mascots wearing running kit for her recent 2.6 challenge.

Thank you, too, to everyone who ordered a mascot.

All 26 mascots have now been sold, but Sue has promised to make some more as soon as she can.

Meanwhile, you can still order a regular nystagmus mascot, wearing a warm woolly hat and scarf, while stocks last.

Visit our online shop here

A YouGov nystagmus awareness survey

The Nystagmus Network commissioned a YouGov survey in May 2020, ahead of Nystagmus Awareness Day on 20 June, 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 we are a member.

The headline results

82% of people have never heard of nystagmus

14% said a friend, acquaintance or family member has the condition

Misconceptions about nystagmus

Once we had explained what nystagmus was, we asked people in what other ways they thought nystagmus might affect a person apart from their eyesight. Alongside the usual suggestions of difficulties with reading and writing, employment, socialising and getting around, a startling 24% thought that people with nystagmus would also have learning difficulties.

One of the Nystagmus Network’s strongest messages is that, whilst nystagmus can affect access to learning, it definitely does not affect ability to learn.

It seems we still have some way to go in delivering this message.

Awareness improves quality of life

Finally, we asked what people thought would most help improve the quality of life of people living with nystagmus. The most popular suggestions were medical research, access to information and adapted technology, with 59% agreeing with us that greater awareness in the general population helps those living with the condition.

We are grateful to YouGov and the Small Charities Coalition for this opportunity to poll the UK population at large and pleased to report that all 250 of our respondents are now ‘nystagmus aware’.