Sue has finished her 2.6 challenge ahead of schedule. She has knitted 2.6 special edition Nystagmus Network mascots in less than 26 days!
Each mascot wears running kit to signify that the 2.6 challenge was intended to replace this year’s London Marathon, cancelled due to the pandemic.
So far, Sue has raised £315 in sponsorship for the Nystagmus Network. She hopes to raise even more funds for the charity as the mascots are now on sale in the charity’s online shop.
Please join us for our virtual quiz night every Saturday at 7pm.
Get everyone together in one room, sign up, log in and away you go.
It’s great fun!
There are cash prizes for 1st, 2nd and 3rd placed players.
Thank you for your support. Taking part in the quiz is helping us keep delivering our support and information services.
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.
Are you taking some time during lockdown to declutter your cupboards and shelves? Now you can turn your unwanted items into donations!
The Nystagmus Network is inviting you to join in with national #DeclutterAndDonate as part of the global #GivingTuesdayNow initiative.
It’s a totally safe and fun way to support our work in the nystagmus community. You’ll have some fabulously tidy cupboards at the end, too!
Thanks to Virgin Money Giving and Ziffit you can now donate your unwanted books, games, CDs and DVDs from your home.
The Nystagmus Network receives the full value, with no fees. You can even add Gift Aid if you’re a UK tax payer.
Here’s how:
From now until 26 May, this is Sue’s daily schedule:
45 minutes yoga
8 hours working at the Nystagmus Network
1 hour walking her dogs
Then carry on with her Two Point Six Challenge for the Nystagmus Network: knitting 26 mascots by 26 May.
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].
Sunday 26 April 2020 was to have been the date of the London Marathon with runners raising £millions for UK charities.
The Nystagmus Network’s runner, Adam, is still training to run in the postponed race in October.
Meanwhile, the organisers have launched The Two Point Six Challenge to help save the UK’s charities by giving us an opportunity to raise some funding to keep us going. It’s also completely safe and a bit of diversion during lockdown.
The Nystagmus Network’s Sue is amongst those taking up the challenge.
The idea is that you set yourself a target based around the numbers 2, 6, 2.6 or 26.
Sue says: “I can’t run a marathon, but I can knit!
Nystagmus Network mascots usually wear woolly hats and scarves, but for my 2.6 challenge I’m going to knit 26 mascots wearing running kit by 26 May. Please sponsor me if you can and wish me luck!”
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.
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
Sara works hard part time as Information Support Officer with the Nystagmus Network, but did you know she also works on the NHS front line? She’s even working today on her son’s birthday.
Her role is with a busy doctors’ practice. Sara says:
“I manage a team of 10 receptionists and support all the clinicians including GPs, nurses and pharmacists. My main responsibility during Covid-19 is first and foremost keeping our patients and staff safe.
‘We’ve had several members of staff needing to self isolate, so it’s a case of putting plans into place for the worst case scenario. To comply with social distancing we’ve had to rearrange the patient waiting area completely. Then there’s the difficulty of keeping staff 2 metres apart throughout the surgery.
‘Fortunately, our patients can message us by email, so saving them the need to come into the surgery. They can describe their symptoms or send us photos of something like a rash they may need help with. We can email sick notes and other documents. Our GPs are also conducting consultations by video call to protect patients and surgery staff.
‘Everyone at the surgery, including my reception team, is working very hard during a time when we’re under incredible pressure. We’re having to amend and update policies and procedures daily as the situation continues to change, but we’re an amazing team and I’m fortunate to be supported by a fantastic NHS work family!”
Well done, Sara. We know how much your GPs value you, especially as you’re their in-house nystagmus ‘expert’, too!
HAPPY BIRTHDAY, CHARLIE! Mum will be home in time for tea!
