Please nominate the Nystagmus Network to win a £1,000 Christmas bonus as part of Ecclesiastical Insurance’s annual 12 days of giving festive campaign.
Ecclesiastical will be awarding £1,000 to 12 charities in 12 days this December. Please help us be one of them.
Nominations are open now until 21 December.
£1,000 would pay for nystagmus information leaflets in hospitals across the UK.
Trustees play an essential role in the running of the Nystagmus Network. Whilst it is not a role to be taken on lightly and may be demanding of time and skills, especially within a small organisation like ours, it can be rewarding for many reasons. Meet our trustees here.
The charity’s trustees share ultimate responsibility for making sure the charity is fulfilling its charitable objectives, and that all decisions put the needs of the nystagmus community first.
Becoming a trustee is a great opportunity to make a contribution. As a trustee you can guide the direction of the charity’s growth and have the opportunity to make a significant impact on an issue of value to you personally. It undoubtedly also offers professional development and the opportunity to work within a diverse team in support of the same cause.
If you would like to become a trustee of the Nystagmus Network and have skills in
please email [email protected]
Can I tell you about Nystagmus? is a guide for friends, family and professionals by Nadine Neckles (illustrated By Vikas Upadhyay).
Sue from the Nystagmus Network talks about Nadine’s book here.
In this friendly guide, a girl called Amber explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help. She invites readers to learn the causes and symptoms, to help others understand the condition and help increase the self-esteem and confidence of those who have it. This accessible guide for children aged 7+ is an excellent starting point for parents, teachers and other professionals working with children with nystagmus. It includes a practical checklist of easy adaptations to make school or home environments easier and more enjoyable for children with nystagmus, as well as a helpful list of recommended resources for additional support.
From 50 km up to 500 km…
You choose Your challenge
With relaxation of the restrictions on travel and exercise, June is ideal to enjoy the great outdoors, push yourself further, and get into shape for the summer!
Join our virtual event – You choose Your challenge from 50km up to 500km, spread it throughout June – share your story, travels, or treadmill with others – and log your distance if you want to.
• Qualifying period – all of June 2020
• It’s 50km up to 500km – you choose!
• Walk, Jog, or Run it – anywhere!
• No rules – just community and honesty !
• Option to log distances on STRAVA
• Special ‘Boost it’ Challenge Medal
• Commemorative ‘Rainbow Neck Buff’
• Printable Boost it for June Certificate
• June ‘Boost it’ is open to any one
• Sign up by 12 June at the latest
• £12.50 to join (inc medal, buff, p&p)
Get your family and friends involved, sign up – get walking, jogging, or running – adhere to social distancing – and share your journey with others. Fundraising to help some special causes as we all go along, would provide an extra boost!
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
(HL) We have very poor understanding of nystagmus, why it occurs and why it’s happening in the first place. We do know that for adults who acquire nystagmus, it’s horrendous because they haven’t compensated for it. The entire world moves around them. So for them it is worthwhile stopping the wobble, because their visual system has developed to work with eyes that are steady.
In some children with nystagmus, we know that when we perform certain kinds of surgery for their null point so that their eyes can be more steady, it does seem to improve their visual function. Just this experience would seem to suggest that reducing the wobble helps to some degree. Eliminating the wobble entirely is a difficult one to answer, because in how many people have we managed to do this? And how can we ask them whether they’re better off with or without it?
(JS) I would agree. I think it’s unlikely that, if we stopped it, it would make visual function worse. People have done experiments with gaze contingent visual tracking so that they look at a screen and wherever their eye looks the image moves to it, so in theory they are simulating removing the nystagmus. It does seem to help with speed of seeing. They haven’t reported having any specific problems, but obviously that’s a simulated scenario. I think it’s unlikely.
The question probably arises because we’ve talked for years about nystagmus being a compensation mechanism for something going wrong. One way of thinking about it is that it’s not an effective compensation. It doesn’t really achieve what it’s trying to achieve, as far as I’m aware.
We will publish more of your questions and the answers Jay and Helena gave over the next few days.
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.
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
Answer: (JS) Nystagmus is the result of a lot of different things going wrong. Traditionally, to try and find a cure for anything you really need to know what that thing is that has gone wrong and quite often it requires very different treatments. It’s a bit like trying to find a cure for stomach ache. You’re never going to find a cure that treats all types of stomach ache. You need to find out what the cause is and then look at lots of different treatments.
There is also the opposite way of looking at it. If nystagmus is the final result, is there something that can be done to stop the eyes from ‘wiggling’. Will that actually help? In some situations and for some people I think it would. For instance, if you’re an adult and you have acquired nystagmus and oscillopsia because your eyes are moving all the time, that is horrendous. So if we could find a cure for that part you might say you don’t then need to know what the underlying cause is.
So there are different ways of looking at it, but I think a single panacea for nystagmus is very unlikely. I don’t think anyone is going to invent a pill which corrects all the underlying causes.
(HL) I would agree with that. It also depends on what you define as a cure. Is it getting rid of the wiggle entirely or is it to deal with some of the side effects of the nystagmus? We will be able to help with a lot of that in time. It’s just a question of dealing with each problem as they come along and dealing with it on an individual basis. Some people may not be bothered by the wiggle but by the visual function. Some people care more about how their eyes look.
But Jay and I remain optimistic that by the end of our careers we will have found some sort of cure for everything that causes nystagmus.
(JS) An added complication is that there are different types of albinism which have their own causes, so one type of treatment might be appropriate for one type of albinism and not for another. The final level of complexity is that things often depend on who you are and where you live. For example, if you live in sub-Saharan Africa the colour of your skin may be the most important thing to you if you have albinism. If you live in Scandinavia or Europe, the colour of your skin may be way down the list and the vision or the nystagmus may be more important to you.
Nystagmus researchers have for a while talked about developing a kind of toolkit which can be added to. For example, for other conditions you have lots of different tools which can be used in different scenarios. That’s the end point we would really like to get to. It’s going to be slow. It will take a long time. There will be advances in some areas, whereas others are falling back a bit. It’s a levelling process. It’s going to take a while.
We will publish more of your questions and the answers Jay and Helena gave over the next few days.
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.
Nystagmus Network staff team members, Sue, Sara and Debbie are all adjusting to the current pandemic and a slightly different way of doing things. Though they all usually work from home, some things have changed.
Debbie is currently furloughed and spending important time at home looking after her family and home schooling her daughters.
Sara is a total hero, working hard every day on the NHS frontline in a busy doctors’ practice, but still finding time in the evenings and at weekends to support the Nystagmus Network, keeping in touch with our members, posting out shop orders and providing support and information on social media.
Sue continues to run our information and support services by phone, email and online. She is also busy organising our Nystagmus Awareness Day activities and our virtual fundraising opportunities and making sure the charity can survive the current pandemic.
With meetings now taking place by Zoom, rather than face to face, Sue is occasionally joined on screen by her loyal ‘co-worker’, her rescue Irish Setter, Bella.
Thank you to everyone who took part in the very first Nystagmus Network virtual quiz night last week.
There may have been a few technical hitches, but it was certainly fun, got us all together and was just a little bit competitive!
Congratulations to Sara, Nick and Rogier for walking away with the cash prizes for 1st, 2nd and 3rd place. You wiped the floor with the rest of us!
Please join us again this week. Click the link to sign up, get your entry code by email and log in at 7pm on Saturday.
A great way to make your time outdoors fun with the children is to go on a bear hunt.
Inspired by the lovely Michael Rosen’s fabulous book “We’re going on a bear hunt” people all over the world are placing teddy bears in their windows so that children can spot them when they’re out walking with their families.
Nystagmus Network’s Sue says: This was one of my children’s favourite books when they were little. We never tired of it. Even today I sometimes tell my dogs we’re going on a bear hunt, but they haven’t caught any yet!”
The Nystagmus Network mascot (pictured) caught a very big one (also pictured) when he went on his bear hunt earlier today.
Michael Rosen is currently unwell. We wish him a very speedy recovery.
Parent carer voices are essential to help shape the services they need for their children and young people.
The East Sussex Parent Carer Forum would like you to get involved.
