Founder and honorary president of the eye health support charity, the Nystagmus Network, Vivien Jones, was delighted and not a little overwhelmed to receive the MBE “for services to the nystagmus community” in His Majesty’s New Year’s Honours List 2025.
Forty years of dedication
How could Vivien have guessed, as she sat in 1984 at her kitchen table stuffing envelopes with information leaflets about nystagmus for other parents just like her, whilst her infant son, Sam newly diagnosed with nystagmus, slept upstairs in his cot, that 40 years later she would be at the helm of a national charity, leading the way in nystagmus research, awareness, support and information and receiving an honour for her work.
It is a fitting testament to Vivien’s hard work and dedication to the nystagmus cause that she receives her honour so soon after celebrating the charity’s 40th anniversary, its Ruby Year in 2024.
An outpouring of responses
Vivien confesses herself to being somewhat overwhelmed by the number of congratulatory messages she has received from well-wishers, including clinicians and researchers who have worked alongside her, charity trustees and volunteers past and present as well as the many people who have been supported by the charity over the years.
She says: “I was very touched by the number of messages and their content. I was amazed and delighted by how many people have contacted me over the award. I see the MBE as a tribute to all those who have helped the Nystagmus Network develop and grow – so thank you everyone.”
A tribute from her colleagues at the Nystagmus Network
Nystagmus Network trustees and staff send our warmest congratulations, sincerest thanks and love to Vivien.
Assets
Images available from sue.ricketts@nystagmusnet.org
Ends
Notes to editors
Contact: Sue Ricketts, Nystagmus Network
Email: sue.ricketts@nystagmusnet.org
Tel: 01427 718093
Website
https://nystagmusnetwork.org/a-bbc-radio-4-appeal/
https://www.facebook.com/NystagmusNetwork
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Linkedin https://www.linkedin.com/company/nystagmus-network/
Nystagmus is a serious, lifelong, incurable form of visual impairment where the eyes constantly move uncontrollably, affecting focus, depth perception and facial recognition. At least 1 in 1,000 babies are born with nystagmus. Many other people acquire nystagmus beyond infancy and into later life.
The Nystagmus Network is a registered charity in England and Wales, number 1180450. Our charitable objectives are to provide support and information, to raise awareness and to fund research.
Our mission is to champion the cause of the nystagmus community we support, to raise awareness of the condition and its impact. We seek to change attitudes, break down barriers, build relationships and drive research.
