Charity marks 40th anniversary

Charity founder, Vivien Jones

The Nystagmus Network, a national charity supporting individuals with nystagmus and their families, has celebrated its 40th anniversary with an event in the House of Lords.

Founded in 1984 by Vivien Jones, the charity was born out of her determination to help other families after her baby son was diagnosed with nystagmus, a complex and incurable eye condition.

Faced with limited information and negative predictions, she initiated a support group that evolved into the nationally recognised charity it is today. Vivien highlighted that the charity’s personal, empathetic approach remains central to its ethos.

The charity’s mission is to raise awareness of nystagmus, challenge misconceptions, and provide education and support to patients and their families. It also champions research into treatments, diagnostics, and genetics, driving advancements that could improve patient outcomes.

Marsha de Cordova MP addressing guests

The charity’s ruby anniversary celebration brought together trustees, staff, volunteers, clinicians, researchers, and donors.

Key attendees included Lord Grayson, who hosted the event in Lord Blunkett’s stead, and Marsha de Cordova MP, a longstanding supporter and newly appointed charity ambassador.

Marsha, who has nystagmus and is registered blind, spoke passionately about her experiences growing up with the condition and her work advocating for visually impaired individuals. Her involvement underscores the importance of public figures in raising awareness and challenging barriers.

The Nystagmus Network plays a vital role in educating healthcare professionals, including dispensing opticians, to improve patient care. Its website provides free downloadable guides, such as managing nystagmus in early years and driving with nystagmus.

Jayshree and Tina at the event

Dispensing opticians can utilise these resources to better understand patients’ needs and tailor services accordingly.

ABDO members Tina Arbon Black and Jayshree Vasani, who attended the event, provide CPD support to the charity – Jayshree as a writer, presenter and CPD facilitator, and Tina as a writer and CPD accreditation partner through Orbitablack.

The Nystagmus Network will be DO Online‘s Eye Health Care Charity of the Month in January.