Author: Sue Ricketts

Nystagmus in the open and the Big Blind Walk

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.

People stand at a clinic reception holding Nystagmus Network balloons.

Nystagmus Awareness Day – for clinics

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.

Children sit around a mat interacting with their teacher.

Nystagmus Awareness Day – for schools

Schools can take part in Nystagmus Awareness Day, especially if there is a pupil who has nystagmus. Talking about nystagmus, celebrating ‘nystagmus in the open‘ will help us raise awareness of the condition and help the children affected explain it to their friends. This can help remove the sense of isolation some children feel. We have a free to download PowerPoint presentation, perfect for assemblies and form time, a Lesson Plan and our special booklet for children, Wobbly Eyes. If you would like some balloons, please contact us.

If you would like to help us fundraise on the day, with a bake sale, fun sports or non-uniform day, you can publicise your ‘nystagmus in the open‘ event with one of our free flyers. There is even a template, so that the children can make their own bunting. They are all free to download.

Thank you for your support, from everyone in the nystagmus community.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus Awareness Day – for sports clubs

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.

Nystagmus Awareness Day – for snow men!

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.

Nystagmus in the garden

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.

Join Easyfundraising.com and raise donations for the Nystagmus Network every time you shop online

We all shop online, but did you know that, by signing up with Easyfundraising.com you could be raising money for the Nystagmus Network – and it doesn’t cost you a penny. You could also take advantage of some great deals.

We already have a growing group of shoppers collecting a few pence, or even a couple of pounds, for us every time they do their weekly shop online, book their holiday or order their next good read. You can use the site to shop with all your favourite online retailers.

So please join Easyfundraising.com today and we can all watch those pennies add up!

ECLO chatting with patient.

Do you know your ECLO?

If you or someone in your family has nystagmus, then make sure you meet your ECLO (Eye Clinic Liaison Officer). You can ask for them the next time you visit the clinic, or find their details on your local authority’s ‘local offer’ page, under visual impairment or sensory services. Alternatively you can search the RNIB’s Sightline Directory.

The role of the ECLO is to support anyone affected by visual impairment or sight loss, from the point of diagnosis onwards. They can offer you information and support and signpost you to organisations, like the Nystagmus Network, who can help you. They can also help you come to terms with your condition and make sure you have someone to talk to.

So if you’re a VIP (visually impaired person), your ECLO is also a VIP (very important person) to get to know.

Find out more about ECLOs.

rebecca presents at the Nystagmus Network Open Day

Nystagmus and Quality of Life

A research paper is republished this month into the quality of life of people living with nystagmus. Professor Irene Gottlob and Dr Rebecca McLean from the University of Leicester shared their findings in the British Journal of Ophthalmology. Their report followed an extensive research study, funded jointly by the Nystagmus Network and Fight for Sight. The purpose was to measure the adverse effects of living with nystagmus across a range of areas of everyday life, with a view to developing a Quality of Life tool. It was concluded that nystagmus does indeed affect every aspect of life.

Read the full report here.

Join the crowds to cheer on Julian as he begins his Big Blind Walk

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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