To achieve our objective of raising greater awareness of nystagmus, the charity publishes articles from time to time on different aspects of the condition. The article we submitted for publication most recently is entitled Wobbly Eyes and explains nystagmus in language a young child can understand. The text is adapted from our free to download … Continue reading Nystagmus Network article published
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?
Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or … Continue reading Nystagmus Awareness Day – for snow men!
Parents often wonder when is the right time to talk to their children about nystagmus and what words to use. Our free to download booklet “Wobbly Eyes” can help. Covering things like going to school, out and about and making friends, the booklet uses child friendly language to help prepare a child for life with … Continue reading Explaining nystagmus to a child
I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all … Continue reading I’m the parent I never thought I’d be
My son, George, has congenital idiopathic nystagmus. The terminology may be familiar to ophthalmologists, but it’s baffling to anyone else. In George’s case, no one can identify a cause. So begins our story of discovery about nystagmus, what it means to those who have it, to those around them and the shocking ignorance of people … Continue reading George has nystagmus – goodbye!