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.

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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Thank you to Mike and Studley Wood GC

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.

The Outspan Rebels VI ski team

Jamie and Josh Fuller are well known in the nystagmus community as the father and son team who delivered an inspirational presentation at Open Day last September. Jamie organised the Nystagmus Network’s first ever ski experience last year and this year they have promised us not one but two ski camps.

The Outspan Rebels VI ski team have enjoyed a very busy few months, kicking off with their Snow Camp in Hinterlux in October. This involved race training and technical skills with their head coach, Charlotte Evans MBE. Team founder, Jamie, said: “It was brilliant to get out to the mountains with a couple of days of challenging weather. High winds and white out conditions made guiding interesting, to say the least. It tested all our skills, especially those new to glacier conditions. On the upside, the bad weather brought fresh snow and some fantastic skiing.”

Then it was back home to the Milton Keynes snow dome for the mixed ability and disability races. The VI skiers performed well in the competition, with Josh, coming up against some very tough competition in his age group. His hard work paid off. He is currently in gold medal position!

Other young visually impaired skiers making huge progress this season are Darcy, new to racing and working with her new guide, Katherine; guide Jim and 10 year old Hester, now skiing under the fantastic team name of ‘Jester’; shy and retiring Charlie, also known as ‘The Monster from Manchester’ once out on the piste; and 11 year old Sam who has been working out in Italy with his guide.

During the Winter Paralympics in Pyeongchang the Channel 4 presenting team, including Outspan Rebels’ head coach and Sochi gold medal winner, Charlotte Evans MBE, were all based at the Snow Dome which meant that the rebels themselves had several opportunities for a brush with fame.

Later this month the Outspan Rebels will be off to Tignes in France to compete in the British Alpine Championships. There they will be rubbing shoulders with more stars: Dave Ryding, Alex Tilley and Millie Knight, along with gold medallists Kelley Gallagher and Menna Fitzpatrick and they will be racing on world cup courses!

Gift Aid it - logo

Have you signed up for Gift Aid?

Did you know that for every pound you donate to the Nystagmus Network and for every pound of your annual membership subscription we can claim an additional 25p back from the UK government, provided you are a UK tax payer? This means a huge amount to a small charity like us and costs you absolutely nothing.

Charities are missing out on £600m because people are not enabling them to claim Gift Aid on donations, according to government research out today. You can read more, here. 

We have paper and electronic Gift Aid forms. So please contact us today to make sure you are signed up to Gift Aid or complete the form below. Thank you.

Open Day 2018 – booking open soon

We are just finalising details of our annual Open Day 2018. We shall once again be in central Birmingham. The date is Saturday, 29 September. The venue is the same as last year, the MacDonald Burlington Hotel, across the road from Grand Central.

We already have some very exciting speakers lined up. We will also be joined by teams of research scientists from the leading nystagmus centres across the UK. Each team will have the opportunity to present their latest research findings and recruit willing participants to new studies and trials. Delegates will also have the opportunity throughout the day to speak one-to-one with research and medical experts.

Education and benefits experts will be on hand to answer your individual questions.

There will be bespoke sessions for adults with CN or AN, parents of children with nystagmus and, not forgetting, the children and young people themselves.

Throughout the day there will also be inspirational presentations, interactive workshops and fun activities for everyone to attend together, to make sure that everyone gets the most from their day.

We look forward to having you with us.

Priority booking for members of the charity will open shortly. Members will be notified personally.

David Katz – our special guest speaker at Open Day 2018

We are delighted to announce that David Katz, the internationally acclaimed photographer, will be joining us as our special guest speaker at our annual Open Day on 29 September.

David was with us all in spirit last year, of course, when we were honoured and privileged to have been granted permission to premier his amazing film, Through my Lenses. In the film David reveals that, throughout his success behind the camera, he managed to conceal the fact that he is actually registered blind. He speaks personally and very movingly about his upbringing, the gift of a first camera from his father and the support from his mother, in particular, who taught him a lesson that will stay with him for life – there is no such word as can’t.

David is currently enjoying yet another official photography assignment, one which we know will hold a very special place in his heart. He is in Pyeongchang, covering the Winter Paralympics.

We look forward to seeing David, again, in Birmingham on 29 September.

 

Marsha de Cordova MP – our Open Day keynote speaker

We are delighted to announce that we shall be joined on Open Day this year by Shadow Minister for Disabilities, Marsha de Cordova.

Marsha has nystagmus and is severely sight impaired. She recently explained to BBC Radio 4’s Intouch programme how she manages her vision problem as part of her busy professional life.

The photograph is by Graeme Robertson for the Guardian.

Every Wednesday is Nystagmus Awareness Day on Facebook

We started national and international Nystagmus Awareness Day, also known as Wobbly Wednesday, back in 2013. But every Wednesday is awareness day on our Facebook page.

This means you can talk about any aspect of nystagmus you choose and ask any questions you like. This is your forum to talk about everything to do with nystagmus.

We will, of course, be celebrating the actual Nystagmus Awareness Day later in the year. See today’s further blog post for exciting news about this year’s theme!

Nystagmus Awareness Day 2018

The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day.

Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.

In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.

To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.

Please watch our blog and social media posts for further news.