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This weeks video blog features Dan giving an overview of the recent UK Eye Genetics Group Conference which was held on the 25th November. The Nystagmus Network was a sponsor of the event!
My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life. I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is … Continue reading Discovering your baby has nystagmus
This week the video blog at the Nystagmus Network features our very own Sue! The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.
We are delighted to announce the final dates and times for our skiing taster sessions for members of the Nystagmus Network! There are three different venues offering the group sessions and these are listed below. You can sign up by completing the form at the bottom of the page. Beginners Hemel Hempstead – 23 November at … Continue reading Sign up to ski!
Our latest video for our blog introduces Wobbly Wednesday, the annual awareness raising day for nystagmus! The video features some of our trustees, including our founder and chairman explaining why the Nystagmus Network is so important.
Jon and Rachael Sweeney organised a charity rock and roll night at their local social club on Saturday 29 October. Their son, Oliver, has nystagmus. They wanted to raise money for the Nystagmus Network to give something back after the support and information they received. Jon says: “I had never heard of Nystagmus until our … Continue reading Charity rock and roll night
On Saturday 29 October young Research Orthoptist, Daniel Osborne, kicked off a whole raft of Wobbly Wednesday activities at the Southampton Eye Unit in real style by riding a 12 mile route around the town on his unicycle. Fuelled by dates, flap jack, fed to him at regular intervals by his stalwart outrider, Kathryn Greenhalgh, … Continue reading A very wobbly unicycle ride
Our video this week focuses on Wobbly Wednesday and why your support is so important! It helps us raise awareness of nystagmus and make it the topic of discussion for the day.
Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism. The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the … Continue reading Do you want to ski like Josh?