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?
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This week the video blog at the Nystagmus Network features the amazing Josh! Josh is a keen skier who loves to take part in ski competitions. However, he was once told that even though he has nystagmus, he’s not visually impaired enough to take part in disability races by the IPC. So, what did … Continue reading No limits
I made my first contribution to the Nystagmus Network Focus newsletter after much parental cajoling and days, weeks, months, if not years, of adolescent procrastination, in the mid-1990s. To save readers from searching the archive, I’ve got what I consider to be mild nystagmus and bad short sight and astigmatism. Contact lenses are better than … Continue reading A mum with nystagmus shares her story
Our latest video blog features an interview with one of our young members! In the video Tom talks about starting his new class at school and how he is a vital part of his school football team! Everyone at the charity would like to say a big thank you to Tom for sharing his experiences.
Today we are excited to officially announce our new volunteers at the Nystagmus Network! Earlier this year we started a recruitment drive to find people who were passionate and committed to supporting the nystagmus community as part of our peer-to-peer support model. The charity was inundated with applications, ranging from adults with nystagmus to healthcare … Continue reading Meet our new Nystagmus Network volunteers!
Our latest video blog features an interview by our very own Sue with two of the charity’s fundraisers! Gavin and Paula Birch recently held a fun day and football match for the Nystagmus Network where they were able to raise funds and awareness of the condition. Their daughter Freya was diagnosed with nystagmus when she … Continue reading Fundraising for the Nystagmus Network