James and Thomas’s Summer Challenge


James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart. James (8) and Thomas (5) have decided to challenge themselves to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and … Continue reading James and Thomas’s Summer Challenge

How amazing is Freya?


I was born with nystagmus and always struggled at school both in the classroom and in PE. All throughout my education it’s been a continuous trip to the printer to enlarge text books and print outs. Things didn’t really change at college. I was told I had dyslexia which could be linked to the nystagmus, … Continue reading How amazing is Freya?

Manchester half marathon places available


Would you like to run the Manchester half marathon this October to raise money for the Nystagmus Network? The race takes places on Sunday 14 October. It starts and finishes by the iconic Emirates Old Trafford, Lancashire Cricket Club. The event boasts one of the fastest, flattest and friendliest courses on a completely closed road route, through the … Continue reading Manchester half marathon places available

How amazing are you?


Have you done something amazing, something you never thought possible, because you have nystagmus? Has your child exceeded all your expectations? If so, we want to hear from you. Last year we heard about the fantastic swimming and fundraising achievements of Annabelle, Tyler and Poppy. This year we want to hear your stories. Between now and … Continue reading How amazing are you?

Nystagmus Awareness Day – for schools


Schools can take part in Nystagmus Awareness Day, especially if there is a pupil who has nystagmus. Talking about nystagmus, celebrating ‘nystagmus in the open‘ will help us raise awareness of the condition and help the children affected explain it to their friends. This can help remove the sense of isolation some children feel. We … Continue reading Nystagmus Awareness Day – for schools

Nystagmus Awareness Day – for sports clubs


Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please … Continue reading Nystagmus Awareness Day – for sports clubs

Nystagmus in the garden


To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting! Sue and her husband have been members … Continue reading Nystagmus in the garden

Nystagmus Awareness Day 2018


The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day. Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week. In future … Continue reading Nystagmus Awareness Day 2018

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

Fundraising for the Nystagmus Network


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