Celebrating 40 years of the Nystagmus Network
A banner marking the Ruby Year of the Nystagmus Network charity, featuring the charity’s eye logo and the words ‘Celebrating our Ruby Year, 1984 – 2024, Information and Support, Awareness, Research’.
As she sat in 1984 at her kitchen table stuffing envelopes with leaflets about nystagmus for other parents just like her, whilst her infant son, Sam newly diagnosed with nystagmus, slept, Vivien Jones could not have guessed that 40 years later she would be trustee of a national charity, leading the way in nystagmus research, awareness, support and information.
In 1984 there was hardly any information available for parents or adults living with nystagmus. The crude benchmark of whether a child might eventually be able to see well enough to drive was just about all the advice there was. That’s not particularly useful for parents worrying what life will be like for their visually impaired baby.
Thanks to the Nystagmus Network information on every aspect of life with nystagmus is now freely available, from the early years, through education, employment, registration as sight impaired, benefits and, yes, there’s even a guide about driving.
2024 marks 40 years of the Nystagmus Network. The charity has had lots to celebrate over the decades. Their involvement in research has led to better diagnostic testing and much greater understanding of the condition and its impact. Watch the Nystagmus Network Ruby Year video – YouTube.
The level of support and information available to parents of newly diagnosed infants has grown too and, since April 2023, referral to local and national charity and statutory support services has been enshrined in a clinical practice point accepted by the Royal College of Ophthalmologists. Known as the Nystagmus Care Pathway or NCP, this was the result of work by NUKE, the Nystagmus UK Eye research group which counts the Nystagmus Network as its patient representative member. Watch a video about the NCP – CPP launch video NUKE 2023 – YouTube.
40 years of stories
The charity encourages adults and children living with nystagmus to share their story. Many choose to talk about their achievements despite, or maybe even because of, having nystagmus. These stories serve to provide further hope and reassurance to parents facing their child’s nystagmus diagnosis and is their first gentle introduction to living with nystagmus and becoming part of the nystagmus community. Our collection of stories can be found here – 40 years of stories – Nystagmus.
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