40 years of stories


Since our foundation in 1984 we’ve seen a lot of changes, shared a lot of stories and supported a lot of people living with nystagmus, all thanks to one woman, Vivien Jones.

Vivien – our founder

How could Vivien Jones have guessed, as she sat in 1984 at her kitchen table stuffing envelopes with information leaflets about nystagmus for other parents just like her, whilst her infant son, Sam newly diagnosed with nystagmus, slept upstairs in his cot, that 40 years later she would be at the helm of a national charity, leading the way in nystagmus research, awareness, support and information.

Watch Vivien’s story on video here