"I'm Not Making This Up!" a new awareness campaign shines a light on nystagmus

The Nystagmus Network has launched its nystagmus Awareness Day 2026 campaign under the theme "I'm Not Making This Up!" 

The slogan is a rallying call for greater understanding of a relatively rare, complex and often invisible visual condition that affects around 2.4 in 1,000 adults and children.

Nystagmus is a little-understood condition that cannot be corrected with glasses or contact lenses. Yet one of the most common and painful experiences reported by people living with it is being disbelieved. People are told to "just get their eyes tested", accused of exaggerating or dismissed by professionals who have never encountered the condition before.

Why "I'm Not Making This Up!"?

The theme was chosen to give a direct voice to the nystagmus community. The staff team at the Nystagmus Network hear time and again from the people they support stories of them not being believed. Because the condition is not always visible to others and people who have it look pretty much the same as everyone else, many people spend years, sometimes even decades, trying to be believed and properly supported.

Sue Ricketts, Executive Information and Development Manager at the Nystagmus Network, told That's Health: "People living with nystagmus are some of the most resilient people you will ever meet. They navigate a world that wasn't designed with their vision in mind and they do it every day. 

"What they shouldn't have to do is fight to be believed on top of dealing with their impaired vision. That is what this campaign is about. We want to make sure this doesn’t keep happening."

What is nystagmus?

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. Support is needed in the early years, at school, in employment and in everyday life.

Campaign Activities

Throughout Awareness Day, the Nystagmus Network will be running:

A social media challenge inviting people to share their own "I'm not making this up!" moment using #ImNotMakingThisUp

Training sessions for healthcare professionals, educators and employers

A fundraising appeal to support the organisation's vital work across support, awareness and research

How to Get Involved

Visit https://nystagmusnetwork.org/awareness/ to read stories, take part in the campaign, and make a donation. Follow us using #ImNotMakingThisUp.

Nystagmus Network launches essay competition 2026

Now in its third year, the Nystagmus Network is pleased to announce the launch of the Richard Wilson Essay Prize 2026, a competition aimed at encouraging budding researchers and students to investigate nystagmus.

In memory of Richard

Richard Wilson OBE served as Chair of Trustees of the Nystagmus Network from 2010 to 2019. During that time he introduced the very first Nystagmus Awareness Day, saw the charity’s investment in nystagmus research top £1,000 per week, established an annual UK nystagmus research workshop and hosted the charity’s first ever clinical training event.

Richard received his OBE from Her Majesty the Queen in the New Year’s Honours of 2018. He sadly passed away in 2023 and is fondly remembered by everyone.

Who can take part?

The competition is open to students of all levels, from undergraduate to post-doctorate, in the fields of Ophthalmology, Optometry, Orthoptics or a visual related science, currently studying or working at UK institutions.

Prizes

First prize: £500 and the opportunity to speak at the Nystagmus Network International Nystagmus Symposium 2026. Your cheque will be presented at a Nystagmus Network event.

Second Prize: £200

Third Prize: £100

Judges

The 2026 panel includes

Dr Onyeka Amiebenomo, Senior Lecturer in Optometry, University of the West of England Bristol

Mr Daniel Osborne, Research Orthoptist and NIHR Pre-Doctoral Fellow at University Hospital Southampton NHS FT

They will be supported in their decision making by Nystagmus Network trustees.

Essay Question for 2026

Richard Wilson, OBE

“How could AI change the way that nystagmus is diagnosed and treated?”

Judging criteria

For entries to be considered they must:

demonstrate a significant level of understanding of current clinical practice for nystagmus in the UK

pinpoint any key areas for development which AI could support

identify how AI assisted research can expand clinical knowledge of nystagmus

Format

Essays to be a maximum of 3000 words in length (excluding any diagrams, graphs, references, bibliography).

Timeline

Applications open in December 2025. The deadline for submission is 30 June 2026.

Submission

Completed essays should be emailed to research@nystagmusnet.org clearly marked ‘Richard Wilson Essay Prize’ in the subject line. Entries must include the full name of the candidate, the UK institution where they are registered, their current level of study and their highest academic qualification to date.

What is Nystagmus?

Nystagmus is a condition that affects the eyes, causing them to move involuntarily and repetitively. These movements can be side-to-side (horizontal), up and down (vertical), or in a circular pattern (rotary). 

The motion is usually rhythmic and can vary in speed and intensity. For people living with nystagmus, the constant eye movement can affect vision, depth perception, and balance, although the impact differs greatly from person to person.

There are two main categories of nystagmus: congenital (or infantile) and acquired. Congenital nystagmus typically develops within the first few months of life and is often linked to conditions affecting visual development, such as albinism, optic nerve hypoplasia, or congenital cataracts. In many cases, no single underlying cause is identified. 

Acquired nystagmus, on the other hand, develops later in life and may be associated with neurological conditions, inner ear disorders, head injury, stroke, multiple sclerosis, or the use of certain medications.

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