Eye Health Care Charity of the Month
Founder Vivien Jones at the charity’s 40th anniversary celebrations
In November 1984, a young mother sat at her kitchen table with a notepad and pen as her infant son slept. She’d just received the devastating news that her baby had nystagmus, a complex, incurable eye condition. She’d never heard of nystagmus before and had come away from the hospital with scant information, most of which turned out subsequently to be inaccurate.
Fast forward to 2024 and the self-help group Vivien Jones started that night had become the Nystagmus Network, a national registered charity with a huge digital reach, providing support and a wealth of information to families and adults diagnosed with nystagmus.
“The charity is called the Nystagmus Network for a reason – it brings people together,” says Vivien.
From self-help group to national charity
Still very much at the helm, and leading the charity’s drive for research, Vivien has seen many changes over the years as she gathered together first volunteers, then trustees and, finally, staff. At the heart of its work are the same values she wanted to share back in 1984.
She explains: “I like to think that the best of those early days – the emphasis on personal contact – has survived in the DNA of the charity.”
Throughout 2024, the Nystagmus Network marked its 40th anniversary with campaigns, events, competitions and 40 years of nystagmus stories. It was an opportunity to reflect, too, on the advances in research and clinical practice.
“There are still very few treatment options available, though complex prescriptions, some repurposed drug therapies and surgery are helpful in some cases, but advances in diagnostic investigations mean that there is now far more accurate information available for families,” says Vivien.
Charity ambassador, Marsha de Cordova MP
The pinnacle of the charity’s Ruby Year celebrations was the Anniversary Reception at the House of Lords in November. Those attending included Vivien’s family, including her son, Sam, fellow trustees, current and former volunteers and staff team members, supporters, donors and fundraisers alongside the researchers, academics, clinicians and eyecare practitioners who have worked with the charity along the way.
In her role as newly-appointed ambassador of the Nystagmus Network, Marsha de Cordova MP will support the charity to raise awareness of this complex eye condition and advocate for better support and understanding within both medical and wider communities.
A former shadow minister for disabled people, Marsha, who has nystagmus herself, brings a wealth of knowledge and advocacy experience to the Nystagmus Network, having been a long-standing advocate for equality and inclusion, especially in areas relating to disability and sight impairment through her role as chair of the All-Party Parliamentary Group on Eye Health and Vision Impairment.
Commenting on her appointment, Marsha said: “In this role, I look forward to amplifying the voices of those with nystagmus and working with this fantastic charity to ensure people get the support they need to thrive.”
The charity has the ambition to drive change in sight disability, amplifying efforts to secure resources, understanding and care for individuals and families impacted by nystagmus. It also stands at the forefront of research, hosting an annual international nystagmus symposium as well as a UK nystagmus research workshop.
Over the past decade, the charity has also directly invested an average of £18,000 per year in nystagmus research.
Executive information and development manager, Sue Ricketts
How to get involved
Through its CPD programme, the Nystagmus Network offers High Street practices the opportunity to gain ‘nystagmus friendly’ credentials. LOCs, chains and individual optical practices can commission in practice or online training, including an interactive workshop entitled ‘Adaptations for the nystagmus patient’ and bespoke sessions on such topics as dispensing contact lenses for nystagmus.
The charity’s executive information and development manager, Sue Ricketts, leads on CPD development as well as patient support. She is keen to work with eyecare practitioners to further the charity’s mission to achieve greater understanding, support and accommodations for adults and children living with nystagmus – and to raise awareness within the general population of nystagmus and its impact.
A board of 12 trustees has overall responsibility for the strategic direction of the charity. Trustees include people living with nystagmus, with lived experience of parental responsibility for someone who has nystagmus and those with professional experience in ophthalmology and orthoptics. Could you share your time and experience to help steer the future of the charity? If so, please contact them.
Those practices already working with patients who have infantile nystagmus, as well as those encountering new cases of acquired nystagmus, can refer patients directly to the charity by phone or email for support, information and networking with others living with this life-changing condition. Alternatively, simply order a supply of signposting leaflets for distribution.