At 12 midday on Wednesday 20 June, Nystagmus Awareness Day, we can get the whole world talking about nystagmus across Facebook and Twitter. All you need to do to take part is follow this link to sign up. Please join us to get the word nystagmus rippling out across the world.
On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk?
On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 John O’Groats Trail. If you can be there to cheer him on, please let us know and we will send you a free Nystagmus Network T-shirt to wear.
Julian is walking to raise £300,000 for sight research. That will be good for all of us. He deserves our support.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world.
We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template.
For those organising a fundraising event, we also have posters – and don’t forget your bunting!
If you would like some leaflets or postcards to take into your eye clinic the next time you visit, or some balloons, please contact us.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please organise a fun sports day or a try out session at your local club or recreation ground and invite everyone to come along. We have free flyers to help you publicise your event. There is even a free bunting template. But if you would like some balloons, you will need to contact us, please.
Last year, with the ‘nystagmus big swim’, we proved that people with nystagmus can be amazing swimmers. Our nystagmus water babies also helped us raise a lot of money through sponsorship. You can help us achieve the same success this year.
Thank you for your support.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or skiing with us at the Snow Dome, Milton Keynes.
Jamie Fuller, from the Outspan Rebels VI ski team, is organising the first of two amazing Nystagmus Network Snow Camps. It takes place on Sunday 17 June.
There will be skiing and sledging for adults and children with nystagmus, their fully sighted parents, siblings and friends. Everyone is welcome to come along. Each session costs just £10 per person.
Charlotte Evans MBE will be there on the day along with Jamie and the Outspan Rebels, themselves. There might even be a few very special visitors!
It is sure to be a great day. So please join us if you can. To register your interest, please contact us.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting!
Sue and her husband have been members of the charity since their daughter was diagnosed with nystagmus in 1991, during the first few weeks of her life. Sue has served as a trustee, volunteer parent adviser and is now an employee.
If you can’t make it to Sue’s garden, please consider making a donation to her Justgiving page instead. Thank you.
If, like Sue, you would like to open your garden for Nystagmus Awareness Day, you can download a free poster or flyer. For more details about this ‘nystagmus in the open‘ event or for advice on how to organise your event, please call Sue on the charity information and support line: 01427 718093.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
If you can join Julian for just one of the 1,000 miles he plans to walk for sight research, or stand at the side of the road as he passes through your town or village, you’ll be in very good company. There will be lots of other people there who suffer from visual impairment and sight loss. You might also see one or two celebrity faces along the way.
The BBC’s Countryfile Team will be filming Julian as he sets off from Land’s End on Sunday 29 April and presenter, Matt Baker, has promised to walk at least some of the route with him. So please turn out to cheer them both on if you can and then remember to tune in to the show later.
If you can’t get to Cornwall, please check the rest of Julian’s route. Maybe you could join Nystagmus Network trustee, Marie, in Frodsham or the ladies of the Keswick WI up in the lakes. And who could resist seeing Julian complete his marathon walk in the Scottish Highlands in June?
Please contact us if you are going to join Julian on the walk and would like a free Nystagmus Network T-shirt to wear.
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Nystagmus Network trustee and golfing enthusiast, Peter Greenwood, traveled to Studley Wood Golf Club in Oxfordshire earlier this week to receive, on behalf of the charity, a cheque for £4,300. The money had been raised during the year at various events by club members, their friends and families after club captain for the year, Mike Lawton, nominated the Nystagmus Network as his captain’s charity of the year. Mike’s daughter, Lucie, has nystagmus and is also a big Nystagmus Network fundraiser. She ran the London marathon for us last year.
Huge thanks to everyone at Studley Wood GC, and especially to Mike and Lucie.
Thanks to Outspan Rebels team founder, Jamie Fuller, who has managed to secure sponsorship from the Snow Sports Foundation, there will be two Nystagmus Network Snow Camps this summer. These will take place at the Snow Dome, Milton Keynes, on Sunday 17 June and Sunday 15 July. If you would like to come along for your very own VI ski session, please contact us today.
As last year, there will be sessions for adults, young people and children, beginners, intermediates and for people wanting to sledge. Each activity will cost just £10 per person.
Friends and family members are welcome to join in, so please bring brothers and sisters along to have a go, too.
Before you get out on to the snow, you will be able to watch the Outspan Rebels VI Race Team training. Charlotte Evans MBE will also be there teaching guides and Guide Dogs for the Blind will be giving advice on how to guide people off the snow. There might also be a few other sporting celebs around and David Katz has promised to come along, too.
Last year 10 year old Eilidh joined for her first VI ski experience. She lost her sight completely a couple of years ago, but she had tried skiing on holiday and loved it. Since then, Eilidh has been working with the Outspan Rebels to learn how to follow a guide with sound. With her guide ahead of her, talking her through her paces using a voice amplifier, Eilidh has improved her skills and her confidence on the snow. You could be with her at the 2026 Winter Paralympics!
Nystagmus Network’s Executive Information and Development Manager, Sue, will be speaking at the Aniridia UK London meeting on Saturday, 14 April.
ANUK warmly invite everyone affected by aniridia to join them for the day.
There will be lots of opportunity to meet and share experiences with other people who have aniridia. There will also be presentations on
If you would like to come along, please book your place by 31 March.
