We’re a group of people dedicated to the nystagmus cause. Most of us either have nystagmus ourselves or support a family member or close friend who does.
Direct, lived experience of nystagmus makes us determined to make a difference.
My nystagmus journey began with the birth of our eldest son Sam in August 1983. At first, all was well but at three months old his eyes developed a wobble – and we were referred to a local eye consultant.
I was born to work for the Nystagmus Network. It just took me a while to realise it. I had a gift for modern foreign languages at school, so I thought I’d be heading to Strasbourg to be an interpreter. And I did! For a while!
