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Check out our new nystagmus booklets!

One of our main objectives at the Nystagmus Network is to provide information and support to the nystagmus community. To achieve this we have been working hard reviewing all of our documents to make sure they are up to date, readily available and appeal to a wide audience.

Not only have we have produced brand new leaflets on nystagmus which we are busy posting out to eye departments across the country, we have also made all our publications for adults, children, parents and teachers free to download from our online shop here.

We want to make sure that everyone receiving a nystagmus diagnosis will know they can turn to the Nystagmus Network for support! If you can’t find any of our new leaflets at your local eye clinic, please let us know by clicking here and we will get in touch with them.

Wide range of topics

These documents cover a wide range of topics from font size to friendship, from coordination to confidence. Whether your nystagmus was diagnosed when you were a baby or you’ve only just discovered that you have nystagmus, the Nystagmus Network is here to support you.

One of our most popular documents is the newly updated ‘Wobbly Eyes’. The first incarnation of this booklet was produced back in the 1990s to explain nystagmus to a child and help them and their parents and teachers come to terms with the condition. The brand new version serves exactly the same purpose and has been designed to appeal to a child, gently outlining what it means to have nystagmus.

“As a QTVI I always recommend the Nystagmus Network to parents and schools where pupils have nystagmus. Great work at getting information out there.” – Janet

There’s more to come!

But we’re not stopping there! There’s much more to come. Your help in the form of membership subscriptions (you can sign up here), fundraising and donations, means that we will be able to continue our important work.

We’ve already begun drafting a brand new book, with the working title ‘Nystagmus explained’. Written very much in plain English and layman’s terms, this book will cover the more medical aspects of nystagmus such as diagnosis, causes, heredity and lifelong effects. It will serve to explain some of the clinical terms you may hear from your ophthalmologist and give you the confidence to engage in discussions with them.

Far from being sent home with just that one word ‘nystagmus’ ringing in your eyes, our publications will empower you to take control, build your knowledge and manage your life with nystagmus.

“Brilliant. Thank you. Been trying to explain things to my six year old” – Marilena

Sue’s journey at the Nystagmus Network

Our second video blog has been recorded by Sue Ricketts. Sue has been involved with the Nystagmus Network for many years and joined the charity as the Communication and Development Manager in 2015.

In the vide Sue talks about her involvement with the charity and how she has seen it grow in strength over the last twenty years!

Remember to keep checking back for the latest post!

Rugby champion shares his nystagmus story!

I’m Wil Maudsley and I was diagnosed with nystagmus at three months old. From the outset my family decided that I would do everything my peers would do and I strongly believe that this has made me the person I am today. Objects do not move around with my vision, but I wouldn’t know what it would be like to have “normal vision”. My nystagmus affects me in different ways day to day like not being able to drive or recognise people at a distance, but sport is one place where I don’t let it. I might find things a little harder than everyone else at first but with the right attitude and enough patience I believe that anything can be achieved.

I currently work as a community rugby league coach for the Warrington Wolves Foundation. Through the foundation we do lots of events to raise money for the charity. I will mention a few that I’m extremely proud of. I am a massive rugby fan and have played since I was four years old. I am currently playing fullback for Woolston Rovers ARLFC in the NCL league.

“From the outset my family decided I could do everything my peers could do” – Wil Maudsley

My biggest achievement to date is completing the national three peaks challenge in less than 24 hours. 23:43 to be exact! The challenge meant that we had to travel to and climb Ben Nevis in Scotland, Scarfel Pike in the Lake District and Mt Snowdon in Wales all in under 24 hours. I was one of only four of our group of 15 that completed the challenge in time. The challenge was physically tough especially having to climb one of the mountains in the dark and, as you can imagine, was a little extra difficult for me.

Another challenge I have completed is our charity cycle to St James Park in Newcastle. We left the Halliwell Jones Stadium on Thursday 28 May and cycled 190 miles over two days, arriving at St James Park on Saturday 30 May ready for a full weekend of Super League fixtures. We battled the rain, hail and wind, along with the North Yorkshire hills, and all completed the challenge safely. It was a fantastic experience and one that I would love to do again.

The biggest lesson I’ve learnt is not to be embarrassed if you need help and not to be scared to ask. When I was younger I was guilty of this and would often struggle on my own. I think I was almost too proud to ask for help. I also think I was a little worried about what people would think of me or how they would react. But in reality everyone I’ve asked for help has been more than happy to. They’re usually genuinely really interested in my eyes and how they work.

“The biggest lesson I’ve learnt is not to be embarrassed if you need help and not to be scared to ask” – Wil Maudsley

Parents share their delight in their son’s success

When Maxine and Matthew Wilson’s son, Charlie, was diagnosed with nystagmus at six months old, they freely admit they went into a panic, which is probably what most parents do when suddenly faced with the prospect of their child growing up with a visual impairment. They thought he’d never be able to play ball sports or ride a bike. How wrong they were!

Charlie is now 8 years old and loves playing football, especially in goal. He has also learnt to ride a bike. In April this year Charlie amazed his parents by riding his bike for 10 miles along the camel trail from Padstow to Wadebridge. It must have been a challenging ride with lots of people cycling in front of and towards him on what is in places a fairly narrow path.

Proud Mum, Maxine, said:

“Charlie doesn’t let his special eyes stop him from doing anything. Lots of people aren’t even aware of his nystagmus. They just know he wears glasses. Keep going Charlie. We are so proud of you and love you lots.”

Volunteer for the Nystagmus Network

The Nystagmus Network is on the look out for more volunteers to help us support our growing community!

We believe that a peer-to-peer support model will make a huge impact on everyone in the nystagmus community. This model is based on support being provided by people who understand the impact of nystagmus on the various groups the charity supports. We want our volunteers to empower parents, teachers and adults with nystagmus and help us build a team of nystagmus specialists to support further the work of the charity.

The volunteer role

We believe that it is important that we have volunteers who are specialists in particular areas which the charity supports. So, we are asking for those people who are willing to answer any emails and / or phone calls from people from the following groups:

  • Parents – babies
  • Parents – school
  • Advocacy
  • Teachers – early years
  • Teachers – primary
  • Teachers – secondary
  • Adults – acquired nystagmus
  • Adults – congenital nystagmus
  • Fundraising
  • Events
  • Overseas

All volunteers will be required to adhere to our volunteer policy and they will be given training to undertake their role.

If you think you can make an impact and would like to volunteer for the Nystagmus Network please complete the form below. We will be in touch once we have reviewed your application and thank you for supporting the Nystagmus Network!

Application form

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Wobbly Wednesday 2nd November 2016 – What will you Wobble?

With just four months to go until the biggest day of the nystagmus calendar, Wobbly Wednesday 2016, it’s time to launch our brand new campaign – “What will you Wobble?”

All you have to do is think of something that wobbles – it’s not that tricky.

You could have a wobbly tooth, or you might wobble when you try to walk in high heeled shoes. Then there’s the Millennium Bridge in London. That was pretty wobbly for a while. There are lots of toys that are wobbly. What about your favourite Subbuteo football team or Weebles – they wobble!

Getting involved

So now we’ve got you thinking about the best thing to wobble, the next step is to take a photo or video clip and send it in to us here or upload it to social media with the #wobblywednesday hashtag.

Make a donation and raise awareness

We are asking everyone who takes part in our “What will you Wobble?” campaign to make a donation to the charity and to use the text below when sharing their photo or video clip.

I’m wobbling for #wobblywednesday!
Text NYST77 £5 to 70070 and wobble for #nystagmus!

Win a prize!

As part of the “What will you Wobble?” campaign the charity will choose the best video and photo. The winners will recieve a small prize!

Inspiration?

If you are in need of some inspiration to take part in the “What will you Wobble?” campaign there will be lots of ideas and things to download from the special Wobbly Wednesday page on our website very soon.

We’ll be posting all the best pictures and details of all the best events planned here too, so please keep looking and check if there is something in your area you can join in with.

We look forward to everyone getting involved with Wobbly Wednesday!

A successful open garden event!

Garden lovers had a rare opportunity this weekend to visit the picturesque gardens of a Wiltshire country estate and help people affected by nystagmus.

On Sunday 12th June Fonthill House, near Tisbury, was opened to the public from 12 – 5pm with proceeds from the event going to the Nystagmus Network. The gardens themselves cover approximately 12 acres, comprising both formal gardens and also an extensive woodland garden, which have been redesigned and redeveloped since 2006.

Lord Margadale currently opens the gardens only three times a year for various good causes and decided to open them for the Nystagmus Network because one of his workers (James Kirk) has a young son with nystagmus. Debbie Kirk, wife to James and mum to Ryan, helped organise the event. She was delighted that it was a success and raised over £2,000 for the Nystagmus Network.

We would like to say a big thank you to James, Debbie and Ryan for holding such a successful event! The money they raised will make a big difference to all the work we are doing supporting the nystagmus community and the new projects we have planned. If you would like to hold an event or make a donation to the charity please get in touch with us or visit our Justgiving page here.

Meet Lucie!

Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an active and interesting life is paramount to me and I can assure you that my childhood was never boring!

At the minute I’m working as an apprentice at a riding school and training for equine qualifications. I’ve passed a fair few already. I have my own horse called Heidi whom I adore. We compete in affiliated show jumping regularly. In the past I’ve also enjoyed skiing, trampolining, golf and rock climbing. I’m also really into running, especially long distance, and I’m hoping to run the London Marathon to raise money for the Nystagmus Network next year.

Like many people with nystagmus, I struggled at school. Asking the teachers to write in a dark pen on the whiteboard and enlarge worksheets was always awkward, but, if you can manage to pluck up the courage, it will be easier next time.

PE was difficult, especially ball games. I used to get hit on the head a lot by the ball because I didn’t see it coming. So we invested in a rugby hat and a gum guard. I suppose I looked a little odd, but I didn’t have to sit out in PE, which I would have hated, so it was good with me! I have some difficulties when I’m jumping or doing dressage twist. I have to remember patterns and sequences and the colours of the jumps so that I know where I am.

When I was learning to play the piano, rather than reading the music, it was easier if my piano teacher played me sections of a piece and I copied them back. When my friends and I go out clubbing, I always make sure I’m attached to someone so we don’t get separated. My friends are all amazing and understand. We went to a club once that had a lot of smoke and strobe lighting that made it difficult to see, but we all just held hands and danced like that so we didn’t get lost! I think my main message is that you can do whatever you want to do and you will find a way around it to make it work.

Informative, inspiring, emotional and motivating!

Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.

Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.

The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.

Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.