In June 2021 Sam will embark on the challenge of his lifetime as he cycles 500 miles in 8 days on the North Coast 500 Cycle Ride for the Nystagmus Network.
But who is Sam?
Find out all about Sam and his challenge at the Nystagmus Network virtual Open Day.
Virtual Open Day 2020, on Saturday 3 October, will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests.
This is a fabulous opportunity to meet, chat and network with nystagmus experts, guest speakers and presenters, supporters and members of the Nystagmus Network whilst enjoying a relaxed meal.
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.
Members registering for this event will receive
Not a member, but like to enjoy the Night in with the Nystagmus Network and lots of other member benefits? Please join us today! Annual subscription is £25. Subscriptions help keep the charity going and enable us to continue to invest in nystagmus research.
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:
Want to run the Edinburgh Festival Virtual Marathon Challenge for the Nystagmus Network?
You can! Here’s how:
Want to run the virtual 40th London Marathon for the Nystagmus Network?
You can! Here’s how:
Want to run the Brighton Marathon 2020 for the Nystagmus Network?
You can! Find out how, here:
Want to raise some sponsorship for the Nystagmus Network?
You can with Justgiving.
Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by several individuals saying that they were totally unaware of the condition previously or that Richard himself lived with nystagmus. We have also enjoyed unprecedented social media engagement. With transmission following closely after Nystagmus Awareness Day on 20 June, the appeal raised awareness of the condition to new heights.
In 2020, when most fundraising has ceased and people with nystagmus have been struggling with homeschooling, social distancing, shopping, lack of hospital appointments and isolation, the appeal has been a lifeline to the charity and the nystagmus community in terms of generating donations.
The total raised has reached almost £8,000 to help the charity extend and develop its support and information services. This means that, as eye clinics and high street opticians begin to reopen, patients and their families will have access to information about nystagmus. Clinic staff will be aware of their needs, thanks to training the charity is now able to provide. In September, when children return to school, parents and school staff will enjoy the benefit of accurate, up to date information about education support to ensure that all young people with nystagmus attain their academic potential.
We are indebted to our wonderful presenter, Richard, for kindly agreeing to voice our appeal and share his own reflections on living with nystagmus. We often tell young children that, with the right support, they can achieve anything, despite their disability. They can even become a famous TV presenter if they work very, very hard. Thank you, Richard, for the inspiration and thank you to everyone who responded to the 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.
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.
Picture of Richard Osman courtesy of Penguin Books
In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories.
Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed.
In previous years we’ve heard some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus.
Let’s make 2020 even more amazing!
Email your amazing nystagmus stories, plus photo, please, to [email protected].
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.
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!
We may all be staying at home, but we can still mark national and international Nystagmus Awareness Day. Here are just some of the ways you can get involved.
In the run up to Nystagmus Awareness Day 2020, we are once again asking you to share your amazing nystagmus success stories. Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus. Let’s make 2020 even more amazing!
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. 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.
The Nystagmus Network is running a Virtual Quiz Night every Saturday at 7pm throughout lockdown. On Nystagmus Awareness Day, 20 June, the quiz promises to be our biggest and best yet. There are cash prizes for 1st, 2nd and 3rd places. So what are you waiting for? Get everyone signed up now!
Our fabulous new publication, Nystagmus is …, inspired by the wonderful Roger, will be launched on Nystagmus Awareness Day 2020. The booklet 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 people can read what it’s really like to have nystagmus by the people who really know.
Nystagmus is … will be available FREE from our online shop on 20 June 2020, but you can pre-order your copy NOW. Simply email us at [email protected].
We have loads of teaching and learning materials available to help mark Nystagmus Awareness Day. There are posters to colour, bunting to make, a PowerPoint presentation, a lesson plan and our booklet especially for children ‘Wobbly Eyes”.
Lockdown doesn’t stop us! Don’t let it stop you! Especially not on Nystagmus Awareness Day!
Here at the Nystagmus Network we raise awareness of the condition every single day of the year, because we 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 and everyone affected will enjoy a better quality of life.
Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that we are here and our voices need to be heard. Every time you take part in Nystagmus Awareness Day or tell someone what you’re doing and why, that’s one more person who understands what nystagmus is.
Every pound you raise or donate helps the Nystagmus Network support our research teams across the UK to investigate this hugely complex condition, to find better diagnosis, treatments and continue to work towards prevention and cure.
Thank you for your support
In case you haven’t heard yet, Southampton born, Mike Larcombe, who has CN, set off on his Walk for Wiggly Eyes on 16 December.
Mike is walking the entire length of both islands of New Zealand to raise awareness of nystagmus and funding for nystagmus research.
The Nystagmus Network is one of Mike’s 3 chosen beneficiary charities. The others are Gift of Sight in Southampton and Blind and Low Vision NZ.
The ‘wiggly walk’ is going to take around 3.5 months in all. It’s an incredible undertaking.
Please watch his progress and send Mike your support along the way, if you can, via Facebook or Instagram. The views are amazing!
THANK YOU
This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.
Delilah and her family offered the perfect story for our Jeans for Nystagmus Genes Day campaign, helping us raise awareness of nystagmus as a genetic disorder.
Thank you, Delilah
You can read Delilah’s Jeans for Nystagmus Genes story, here.
