We publish our annual review 2018


Trustees are pleased to announce that the 2018 Annual Review of the Nystagmus Network is now published on the Charities Commission website. Chairman of the charity, Richard Wilson OBE, says: “In summary, 2018 has been an outstanding year of success for the Nystagmus Network, building more awareness, investing in more research, offering more support and … Continue reading We publish our annual review 2018

How amazing is Sonny-John?


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?” On Nystagmus Awareness Day itself a family shares their son’s amazing nystagmus story … “Our eldest boy, Sonny-John has nystagmus, and from as long as we can remember he has been … Continue reading How amazing is Sonny-John?

How amazing is Jane?


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?” Jane believes that having a sense of humour really helps. Here she tells her story: “My name is Jane and I have idiopathic, congenital nystagmus. My wobbly eyes have given me challenges, … Continue reading How amazing is Jane?

How amazing is Alfie?


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?” To his parents, Alfie truly is AMAZING. Here’s what they have to say about him … “As well as having nystagmus, Alfie also has FEVR, a progressive eye condition that affects … Continue reading How amazing is Alfie?

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 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?

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?