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 … Continue reading Sue’s journey at the Nystagmus Network
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 … Continue reading Rugby champion shares his nystagmus story!
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. Remember to keep checking back for the latest post!
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 … Continue reading Parents share their delight in their son’s success
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 … Continue reading Volunteer for the Nystagmus Network
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 … Continue reading Wobbly Wednesday 2nd November 2016 – What will you Wobble?
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 … Continue reading A successful open garden event!
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 … Continue reading Meet Lucie!
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 … Continue reading Informative, inspiring, emotional and motivating!
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 … Continue reading Mark’s story