The Nystagmus Network is a national registered charity with a small but dedicated team of trustees, staff and volunteers committed to supporting patients diagnosed with nystagmus and their families.
In 2024, the charity marked its 40th anniversary with a series of events, culminating in a prestigious celebration sponsored by Lord Blunkett in the River Room at the House of Lords on Tuesday, November 19. The impressive grandeur and ornate architectural detail, along with the stunning views provided an ideal setting for this event.
Although Lord Blunkett was unable to attend, Lord Grayson stepped in to meet the charity founder, trustees and staff along with current and former volunteers, donors, fundraisers, researchers, academics and clinicians who have supported the Nystagmus Network.
The evening began with Tim Cudderford, the chair of trustees, thanking all those who supported the charity. Vivien Jones, the charity’s founder, followed with a moving speech recounting the origins of the charity 40 years ago, sitting at her kitchen table, after receiving the life-changing news that her baby son had nystagmus, a complex, incurable eye condition.
Being faced with a lack of accurate information, only being told ‘your son will never be a pilot’, left this new mum determined to make a difference, so she started a self-help group, writing letters to other families who had received the same diagnosis. This modest support group evolved into the Nystagmus Network, a nationally recognised charity with a substantial online presence, providing extensive support and valuable resources to both families and adults living with nystagmus.
Vivien Jones said: ‘I like to think that the best of those early days, the emphasis on personal contact, has survived in the DNA of the charity.’
Marsha de Cordova, member of parliament for Battersea, was born with nystagmus and is registered blind. She is the current chair of the all-party parliamentary group for sight loss and visual impairment. De Cordova (pictured below) explained the impact and challenges she faced growing up with nystagmus and has been a passionate advocate for the rights and opportunities of visually impaired people. A longstanding supporter of the charity, she has recently agreed to become a Nystagmus Network ambassador.
The Nystagmus Network has supported research since the 1990s prioritising studies into treatment, diagnostics and genetics. In memory of the late Richard Wilson OBE, a former Nystagmus Network chair of trustees, an annual writing competition was established. The prize winner, Justine Chan, who is currently studying medicine at Cambridge University, received a £500 cheque for the inaugural Richard Wilson essay prize 2024 for her article on genetics.
The Nystagmus Network works with a number of nystagmus research clinical specialists, many of whom attended the celebration including Jay Self, associate professor of clinical and experimental sciences, faculty of medicine, Southampton University, and Jon Erichsen, professor of visual neuroscience, school of optometry and vision sciences, Cardiff University.
The Nystagmus Network website serves as a valuable practitioner resource with free downloadable guides on acquired and congenital nystagmus, a guide to nystagmus and the early years, and driving and nystagmus.
Sue Ricketts, executive information and development manager and an experienced CPD presenter, recently led a discussion workshop
at the Association for Independent Optometrists and Dispensing Opticians 2024 conference on adaptions and support for patients with nystagmus.
This presentation aimed to improve understanding within optometric practice and highlight reasonable adjustments that can be made in practice to improve access to optical care for visually impaired patients. It is hoped this presentation will be delivered online and face to face to optometrists and dispensing opticians throughout the UK.
The Nystagmus Network’s ruby anniversary marks a significant milestone for the charity. Celebrating this occasion in the prestigious House of Lords River Room is a fitting tribute to the charity’s remarkable journey. The grandeur of this event underscores the importance of their work, highlighting the charity’s dedication to improving lives and advocating for patients with nystagmus as well as symbolising the progress and impact this charity has made.
This celebration not only honours past accomplishments of the Nystagmus Network but also sets a hopeful vision for the future of what can be achieved when a small, dedicated group of individuals work together to make a difference.
