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!
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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
We are delighted to announce that the Nystagmus Network is launching its new blog! Check out the video above which gives you all the information you will need about what we are hoping to achieve through the blog.
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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.”
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.
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:
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!
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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!
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.
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.
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!
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!
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.
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.
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.
I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened – luck or design?
My arrival back in the 60s was a great cause for celebration. My family had just moved from Dover to a market town nestled at the base of the South Downs. My brother and sister were two years apart and happy healthy children. My father had just accepted a promotion as a district engineer. They had a new house on a new estate and to top it off I was born.
Apparently I didn’t wreck the party. My sister remembers dad breaking the news to her on the way to the nursing home. ”He’s got something wrong with him, shall we send him back?” He was promptly whacked around the back of the head by my grandmother, who reminded him first to keep his eyes on the road and second, Aunt Jess had also had congenital nystagmus, “and she could play anything on the piano after a sherry”. That’s true, said Dad, “but that talent may not be enough to get him into the civil service or a cricket team”. Another tweak silenced him and my eyesight was never mentioned again.
Once I had been allowed home, I settled down to a long period of recumbent bliss. I was very happy and didn’t want to exert myself. I had blond spiky hair, a fat little face and a happy disposition. Dad would often get someone to poke me so he could capture a smile on his latest gadget, a 35mm cine camera. It wasn’t until after a year, when I still showed no signs of sitting up, that people started to worry. Dad complained that the films were getting boring and that there was a limit to how interesting a horizontal baby was.
Mum took a more practical view. I had all the tests of the day and saw doctors, specialists and health visitors. Sure enough, in my own time, I did eventually sit up, speak, eat and learn to walk. It was here I made my first big mistake. One Christmas, I picked up a discarded plastic ball from a cracker and threw it to my brother. My father’s face lit up with excitement and a huge grin spread across his face, fuelled by a seasonal eggnog. Mother sighed as my father reached for a cricket stump and held it aloft, brandishing it as some kind of ash light sabre. “That’s me lad!” he cried, as he knocked the fairy from the tree, lost his footing and collapsed into a plate of mince pies. My training as his young apprentice was about to begin.
Dad and Obi Wan did not have a lot in common. I’ve seen all the Star Wars films and I don’t recall the Jedi master ever calling Luke Skywalker a “fat head” or chastising him for avoiding a particularly nasty full toss. To be fair, I also don’t remember him giving Luke as many hugs, smiles and kisses as my father gave me. What they did have in common, however, was love, support and a willingness to let their young students live their lives and make their own mistakes.
It’s only with the birth of my children that I realise they must have been incredibly apprehensive about sending their youngest out into the world. True, they had some history of bringing up children, but now they were in uncharted waters. They never pushed me in to see if I sank or swam, they just encouraged me to paddle and watched from the shore.
All was bobbing along nicely until, by a disastrous series of events, I was picked for the school cricket team…
