Vivien Jones is the Founder and Honorary President of the Nystagmus Network. She started the charity in 1984 to support parents like her. Her son, Sam had recently been diagnosed with nystagmus. She could find no information about the condition and resolved to change that.
Today Vivien heads a charity providing support and information to parents and adults living with congenital or acquired nystagmus across the UK and around the world.
Vivien is chair of the charity’s research committee and drives investment in new research. Raising awareness also continues to be very close to her heart. She gives talks whenever she can.
This is Vivien’s account of a talk she gave just last week:
I am a friend of Sue Darney, this year’s President of the East Grinstead branch of the Soroptimists. Sue heard me talk about the Nystagmus Network and said she’d like her organisation to support the charity during her year as President. I got a very warm reception when I talked about the origins and development of the Nystagmus Network, about how things began with a consultant telling Ian and me that Sam had nystagmus when he was three months old. I recalled how Ron Mallett of the London Refraction Hospital (now the Institute of Optometry) and I agreed it would be helpful to have a patient group to avoid the kind of information black hole which we as parents had fallen into and how things progressed from there. I told them the story of Sam – including how he progressed from wearing dark glasses with black leather side-pieces to deal with his chronic light sensitivity to getting tinted contact lenses from Guy’s when he was six or seven. Talking about Sam’s journey and the development of the Nystagmus Network always makes me get emotional – and this talk was no exception!
It was wonderful getting the support of the local Soroptimists – they couldn’t have been kinder or more supportive.
Vivien is pictured receiving a cheque for £40 from Sue Darney