Our wobbly week competition


It’s wobbly week! And it’s Nystagmus Awareness Day this Thursday, 20 June. We want to raise as much awareness of nystagmus as possible and make sure that everyone has a chance to take part, so today we’re launching our wobbly week competition: Nystagmus is … Following on from Roger’s amazing description of his nystagmus, we … Continue reading Our wobbly week competition

How amazing is Mike?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” For those of you who don’t know Mike, he’s a hugely valued member of the Nystagmus Network team. He’s our volunteer benefits adviser and the fount of all knowledge when it … Continue reading How amazing is Mike?

How amazing is Phebe?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Today Phebe tells her own nystagmus story. “My name is Phebe and I am graduating tomorrow from the 5th grade. I love to play soccer, lacrosse, tennis and ski. I also … Continue reading How amazing is Phebe?

How amazing is Ursula?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Today Ursula shares her own amazing story. Hi guys! I just wanted to share my story with you as this may give other people with nystagmus, or parents that have children … Continue reading How amazing is Ursula?

Our Manchester Event


Manchester Royal Eye Hospital is holding a Nystagmus Awarenessafternoon filled with fun activities for children and young people, as well asinformation for parents, carers and families of children with nystagmus.Guests from the Nystagmus Network include the charity’s volunteer benefits adviser, Mike Hughes and trustee, Marie Turnbull who will be available for discussions and to provide … Continue reading Our Manchester Event

How amazing is Roger?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Here’s a story we just had to share. When Roger contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” We were hooked. Roger went on to … Continue reading How amazing is Roger?

How amazing is Poppy?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Poppy has ocular albinism, nystagmus, astigmatism. She needs to be approximately 1 metre away to see what normally sighted people can see from 6 metres. She never let’s anything stop her. … Continue reading How amazing is Poppy?

How amazing is Nabin?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Nabin has had nystagmus since my birth. His vision is 6/36. He tells us he’s had many troubles at school. He always needed to ask the person sitting next to him … Continue reading How amazing is Nabin?

How amazing is Hanna?


In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Today we introduce our friend, Hanna Have you met Hanna? Hanna has congenital nystagmus and lives in Germany. She has been coming to the UK Nystagmus Network Open Day for a … Continue reading How amazing is Hanna?

How amazing is Calum?


Once again, in the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Here’s Calum’s story, by his Mum, Katie Our son Calum is now ten years old and has congenital nystagmus.  When he was first diagnosed we were told his eyesight … Continue reading How amazing is Calum?