Discovering your baby has nystagmus


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

Peterborough Community Radio interview


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.

Charity rock and roll night


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

A very wobbly unicycle ride


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

Do you want to ski like Josh?


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?