Month: July 2016

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!