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.
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.
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!”
You, your family and friends are warmly invited to take part in The 2.6 Challenge from Sunday 26 April to help to save the UK’s charities.
The Covid-19 pandemic has had a devastating effect on charities, with the cancellation of 1,000s of events and the loss of £billions in fundraising income.
In response, the organisers of the biggest mass-participation sports events across the country have come together to create a new campaign to raise vital funds to help to save the UK’s charities, including the Nystagmus Network.
The 2.6 Challenge will launch on Sunday 26 April – the original date of the 40th London Marathon, the world’s biggest one-day annual fundraising event.
We’re asking you to take part in an activity of your choice based around the numbers 2.6 or 26 and fundraise or donate to support the Nystagmus Network with twopointsixchallenge.co.uk
People of all ages are taking on The 2.6 Challenge with all kinds of activities – from walking, running or cycling 2.6 miles, juggling for 2.6 minutes, to holding online workouts with 26 friends.
The ideas and options are endless!
Just remember, please, that you must follow Government guidelines on exercise and social distancing.
Most people are taking part from Sunday 26 April, but you can do your activity whenever suits you best.
1. Dream up your 2.6 challenge – if you need help there are lots of ideas here
2. Head to twopointsixchallenge.co.uk to donate £26 – or the amount of your choice – to the Nystagmus Network or to set up a fundraising page
3. Ask all your friends and family to sponsor you and challenge them to do their own 2.6 Challenge
4. Complete your challenge
5. Share a photo or video of your challenge on social media using #TwoPointSixChallenge
We hope you’ll join the nation in The 2.6 Challenge to support the Nystagmus Network and help to save the UK’s charities.
THANK YOU for your support
The competition is really hotting up now as more and more players are signing up to take part in the weekly Nystagmus Network virtual quiz night on Saturdays at 7pm.
Get everyone together in one room, sign up, log in and away you go.
It’s great fun and getting very competitive.
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 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
We’re still here supporting the 1 in 1,000 people who have congenital or acquired nystagmus, by phone, email and on social media, but we do need your support now more than ever before to carry on.
With marathons, 10k runs, sky dives and tough mudders all postponed for the summer, there’s still lots of opportunity to take part in virtual runs and challenges right now.
Make the most of your time outdoors (or inside!) with a fabulous fundraising challenge. Choose from Climb Everest, the Inca Trail, Team Gotham and many more.
1. Sign yourself up
2. Set up your Justgiving page for sponsorship
3. Take part in your virtual challenge
The Local Landmarks Challenge is a solo, virtual run, around your local landmark. That could be anything from your local church, castle, park, statue or even post-box. You decide the distance.
Are you walking someone’s dog, doing their shopping or collecting their medicine? That’s brilliant! Why not get sponsored for it? Set up a JustGiving page to get you started.
Join our virtual Quiz Night. We’re running a fun Nystagmus Network virtual quiz night every Saturday at 7pm.
It’s a great way to get everyone together and there are cash prizes for the 1st, 2nd and 3rd placed players.
Celebrate your birthday in lockdown with a birthday fundraiser.
If all that’s just a too bit energetic, please consider making a donation to the Nystagmus Network
Why not donate what you would normally spend on travelling to work?
Could you donate what you normally spend at the coffee shop?
Think of the money you’re saving with all those nights in!
Make the most of your time outdoors (or inside!) with one of these fabulous fundraising challenges.
Choose from:
Climb Everest – A 12 week challenge perfect for isolation. Complete a climb equivalent to Mount Everest (8,848m) either out and about on your daily exercise, climbing the stairs indoors, or a combination of the two!
Inca Trail – A virtual challenge to tick off the bucket list. A 25 mile run, walk or jog to be completed in as many efforts as you can manage.
Team Gotham – Not all Superheros wear capes … some have to fight crime in isolation too! This is a 5k challenge, perfect for families who want to complete it together, or anyone looking to stay fit during lockdown.
The Big Charity Run – The ultimate challenge: pick a 30, 60, 90 or 120 mile distance to complete over a single month. You can run, walk or cycle so set yourself an ambitious target and stay motivated!
Location Specific Races – If you’re looking for something that’s as close to a road race as physically possible, there are a number of location specific races included so you can take part in a race on a specific date.
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.
