Mike and his nephew, both wearing WWE T-shirts, fist bump for the camera.

Mike’s Southampton family send off

As Mike takes on his latest Walk for Wiggly Eyes 4 challenge in Croatia, his Mum, Karen, tells us about an amazing party she hosted for Mike, his family and friends at home in Southampton.

“Mike of Walk for Wiggly Eyes (W4WE) had a week’s stop at home before he started the challenging 1400 mile walk along the Croatian Long Distance Trail (CLDT).  This presented a great opportunity for friends and family to have a get together for a fun(d) raising party. Thanks to the generosity of everyone and the fantastic gifts that were given as prizes for the raffle, over £900 was raised to share between the Nystagmus Network and Gift Of Sight.

‘Mike has congenital nystagmus and consequently his vision is impaired however his inspiration for this walk is his nephew Archie (pictured with Mike) who also was born with nystagmus. Mike’s goal via his W4WE fundraising is to continue to raise awareness of nystagmus and donations to fund ongoing research to improve the sight of those living with nystagmus and other eyesight conditions.

‘Mike is now on the CLDT trail and he is going to have to tackle many obstacles along the way. You can follow his journey via https://www.walkforwigglyeyes.com/ and if you would like to donate to help Mike reach his target please click on the link  https://www.justgiving.com/page/walk-for-wiggly-eyes-nystagmus-network4″

Thank you Karen and thank you to everyone who gave so generously at the party.

Save the date for Giving Tuesday.

Save the Date for Giving Tuesday

Our Community is strong. Please help us grow it even stronger.

Giving Tuesday is a day when people and organisations from all over the world come together to support the causes and communities that mean so much to us all.

Last year, we set a goal of £500 and our amazing supporters came together and raised just over £600!

We know times are tough and many people’s situations have changed. As a charity, we too need help now more than ever to continue to offer support and information free of charge to the nystagmus community.

Please help by giving what you can – just £5 makes a big difference – on Tuesday 29th November.

Thank you for your support.

A postcard with pictures of people walking and the words Nystagmus Network walk 500 miles for nystagmus research.

Could you help us walk 500 miles?

If 50 people each walked 10 miles and raised £100 in sponsorship, that would be £5,000 for nystagmus research.

Why 500 miles?

That’s roughly the distance you’d cover if you walked from one UK nystagmus research centre to all the others. Let’s see if we can do it!

Starting at University Hospital, Plymouth, calling at The University of SouthamptonCardiff UniversityMoorfields, LondonThe University of Leicester, you’d eventually arrive at the University of Sheffield some 565 miles later. But you can walk just 10 miles.

What would £5,000 buy?

Here’s a list of just some of the things Nystagmus Network trustees could invest £5,000 in:

  • diagnostic equipment for use in a research or clinical setting
  • an academic post to focus on an aspect of nystagmus
  • a brand new in person nystagmus research trial

How to set up your 10 mile walk

  1. Decide on your route – you can build up your 10 miles with lots of shorter walks over several days
  2. Set up your Justgiving page for your sponsors here; we’ll help you promote it
  3. Download a sponsor form here for your offline donations
  4. Tell all your friends and family about your walk
  5. Tell the Nystagmus Network!
Simon Riggs after skydive

Fancy a skydive for the Nystagmus Network?

Skydiving is an extreme sport and not for the faint hearted, but it’s the perfect opportunity to ask your friends and family to sponsor you!

In 2018, Simon raised over £1,000 for the charity watched by friends and family, including his son, Charlie, who has nystagmus.

For more information and to set up your skydive for the Nystagmus Network, email as at [email protected].

a banner promoting easyfundraising, asking our supporters to help us reach our target this year.

Thank you to our easyfundraisers

Thank you Fiona, Jackie, Jane, Lyndsay, Rachel, Sofie, Sue, Tim and all our other lovely supporters for raising donations for the Nystagmus Network with easyfundraising! If you haven’t signed up yet, it’s easy and completely FREE. 6,200 shops and sites will donate to us when you use easyfundraising to do your everyday online shopping – at no extra cost to you! Every donation you raise makes a difference to us so please sign up and share today.

Join easyfundraising here

Part of the ultra challenge series logo

Join our Easter Challenge and get fit for the summer

Take on a 50 km Ultra or a historic 25km – and make it an active Easter! From the Windsor Racecourse base camp 1500 adventurers will head out on looped routes through the Great Park with fantastic views of the Castle, on to Runnymede, along the Thames Path, and take in some wonderful countryside. You’ll get full support all the way, a few post Easter surprises, a celebration finish at base camp and a BBQ meal. It’s a great way to kick off the 2022 Ultra Challenge season and to get in shape for summer. The Nystagmus Network will part fund your place.

Until 28 February 2022 you can get 50% off your registration fee when using code NYCHARITY22 on all CHARITY SPONSORSHIP places.

Select your Ultra Challenge here

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

Boost it for June


Anywhere – Anytime…


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From 50 km up to 500 km…

You choose Your challenge

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Sign Up Now…

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)

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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!

Sign Up Now…

Glen’s taking the abseil challenge. Could you?

Glen is a member of the Nystagmus Network and a true friend of the charity. We were privileged to meet him last year when he led a workshop at Open Day on building social networks. You can read all about Glen’s adventures as a successful young man about London, who just happens to have aniridia and nystagmus, on his blog, Welleyenever.

Now Glen is taking the ultimate challenge for nystagmus research. He’s gong to be abseiling down from the 262 feet high viewing platform at the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park. It’s an exhilarating descent to the ground and Glen’s really looking forward to the breathtaking views across London.

You can join Glen for the Team Nystagmus Network Abseil. Contact us today for details.

To sponsor Glen, please visit his Justgiving page. Thank you!

Claire’s taking the leap for nystagmus. Want to join her?

Introducing Claire, the next member of Team Nystagmus Network Abseil. Claire is a keen rock climber, so abseiling her way down the ArcelorMittal Orbit is going to be a walk in the park! She’s doing it all to raise money for nystagmus research at Moorfields and UCL.

If you’d like to join Claire, please contact us today!

To sponsor Claire, please visit her Justgiving page. Thank you!