Founder of Nystagmus Network Receives MBE for Services to Nystagmus Community
Vivien Jones, founder and honorary president of Nystagmus Network, a charity supporting those with visual impairment, was honored with an MBE for her services to the nystagmus community in His Majesty’s New Year’s Honours List 2025.
Jones, who has been dedicated to the cause for over 40 years, was surprised and overwhelmed by the recognition. She started her journey in 1984, stuffing envelopes with information leaflets about nystagmus for other parents while her infant son, Sam, who was also diagnosed with the condition, slept upstairs in his cot.
Today, Jones leads the way in nystagmus research, awareness, support, and information through Nystagmus Network, which celebrated its 40th anniversary in 2024.
Jones’ hard work and dedication to the nystagmus cause have not gone unnoticed, as she has received an outpouring of congratulatory messages from well-wishers, including clinicians, researchers, charity trustees and volunteers, and those who have been supported by the charity over the years.
In response, Jones humbly stated, “I see the MBE as a tribute to all those who have helped the Nystagmus Network develop and grow – so thank you everyone.”
The Nystagmus Network, along with its trustees and staff, sends their warmest congratulations and sincerest thanks to Jones for her incredible contributions to the nystagmus community.
Assets available for media use include images from sue.ricketts@nystagmusnet.org.
For more information, please contact Sue Ricketts at sue.ricketts@nystagmusnet.org or 01427 718093.
Nystagmus is a serious, lifelong, incurable form of visual impairment that affects focus, depth perception, and facial recognition. It is estimated that at least 1 in 1,000 babies are born with nystagmus, and many others acquire the condition later in life.
The Nystagmus Network is a registered charity in England and Wales (number 1180450) with the goal of providing support and information, raising awareness, and funding research for those with nystagmus.
Their mission is to advocate for the nystagmus community, raise awareness of the condition and its impact, and drive research. For more information, please visit their website at https://nystagmusnetwork.org/a-bbc-radio-4-appeal/ or follow them on Facebook at https://www.facebook.com/NystagmusNetwork, Twitter at https://x.com/NystagmusUK, and Linkedin at https://www.linkedin.com/company/nystagmus-network/.
Derick is an experienced reporter having held multiple senior roles for large publishers across Europe. Specialist subjects include small business and financial emerging markets.