Vivien Jones

Vivien founded the Nystagmus Network in 1984. She continues to serve as a trustee and is the Honorary President of the charity.

  • Role: Founder, Honorary President and trustee, chair of research committee
  • Email: [email protected]

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.

Found out more about Vivien and the charity story in this video.