Frances Lilley – Education Advocate


The information and links in the Nystagmus Network Education Resources Hub have been collated and compiled by the charity’s volunteer Education Advocate, Frances Lilley. Frances has been voluntarily supporting families with education for many years on behalf of the charity. She became a trustee in May 2016. She has a teenage daughter with congenital idiopathic nystagmus.

Trained by IPSEA, Frances gives parents and carers one to one legally-based advice and support on how to negotiate the education system in England, so that children and young people with nystagmus can access support across all stages of education. Her caseload now numbers over 75 families.

Our education advocacy service is available free of charge to members of the Nystagmus Network.