Author: Sue Ricketts

Nystagmus Network Snow Camps 2018

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!

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.

Sue will be at ANUK conference

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

  • Psychology and aniridia
  • Research and treatment for aniridia
  • Life, sleep and  mental health with a visual impairment
  • Support from Access to Work
  • Nystagmus (delivered by Sue!)

If you would like to come along, please book your place by 31 March.

VIEW logo.

Meet Sue at VIEW

This Thursday, Sue from Nystagmus Network, will be attending the annual VIEW conference for teachers and specialists in educating visually impaired children and young people. The event takes place over two days in Birmingham.

Delegates will find Sue in the exhibition area, eager to demonstrate the support and information the Nystagmus Network has to offer to schools staff.

Sue attends Partially Sighted Society Conference 2018

Last Friday Sue attended the PSS very first Sight Loss conference in Doncaster on behalf of the Nystagmus Network. The day was attended by around 100 people with visual impairment, their family members and friends, carers and health professionals.

It was an opportunity to hear from senior medical and research specialists as well as listen to the personal stories of people living with sight loss.

One speaker, Mr Sid Goel, Consultant Ophthalmic Surgeon, spoke about the advances in cataract surgery, suggesting that cataract removal is always a good idea, even if the patient already has reduced vision due to other causes or conditions.

Sue took the opportunity to ask specifically about patients with nystagmus, a question we often hear from members of our community. Mr Goel was able to provide reassurance that the topical anaesthetics used during the procedure to prevent the sensation of pain also serve to numb the muscles controlling eye movements, which means that the surgery can go ahead without fear of eye movement.

Concerns about surgery and nystagmus are, of course, understandable. We have heard from several people with nystagmus who have had cataracts removed in adulthood, however. They report that their former vision and, in particular, colour perception is restored afterwards to previous levels and they are naturally delighted. Mr Goel would agree. Similarly, babies born with congenital cataracts usually have these removed in early infancy in order that the sight can continue to develop.

Please consult carefully with your surgeon before embarking on any surgery.

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.