Vivien Jones


Vivien founded the Nystagmus Network in 1984. She continues to be involved and now serves as the President of the charity.


Vivien found it so lonely when her son Sam was born with nystagmus and she felt driven to establish what is now the Nystagmus Network. She is thrilled it has become a thriving charity and since it was founded in 1984, the charity has been a big part of her life. Vivien drew huge comfort from being able to talk to other parents and those with the condition when Sam was young and she remains passionate about trying to reach as many families as possible who are affected by nystagmus.