Tag: nystagmus

somoene selecting a book from a library shelf

What’s your nystagmus research question?

The Nystagmus Network has been investing in research since the 1990s.

Nystagmus academics, clinicians and researchers in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton continue to focus on causes, effects, treatments and quality of life.  

In the last 30 years we’ve seen huge advances in the sophistication of diagnostic techniques, with more widespread use of electronic testing providing ever more accurate clues to the causes and likely impact of nystagmus.

Optical, medical and surgical treatments have also been developed to improve both the vision and the quality of life.

There has been much to celebrate.

But, despite some emerging signs of potential early interventions, sadly, prevention and cure still seem a long way off.

We need more research!

To kickstart more nystagmus research, we need two things: money and a good research question.

You can help us!

Tell us which aspect of life with nystagmus you think researchers should examine as a priority to achieve the greatest impact on people living with the condition by submitting your research question today. We will collate all your responses and put them to researchers in a bid to start some new nystagmus research.

Your research question should be:

  • Focused on a single aspect of life with nystagmus
  • Researchable using primary and/or secondary sources
  • Feasible to answer within a reasonable timeframe
  • Specific enough to answer thoroughly
  • Complex enough to attract academic interest
  • Relevant to the lives of people living with nystagmus

Please use the form below to submit your nystagmus research question.

The deadline for submissions is 31 March

Alternatively, you can make a donation to the Nystagmus Network research fund to help us continue to push the boundaries of scientific investigation.

A blurred image of people walking in the street

Does nystagmus affect perception of movement?

A new study by a team of researchers at the University of Melbourne, published in January 2022, set out to assess the effect, if any, of nystagmus on the perception of movement. Scientists also sought to establish whether those effects changed when the null point was in play.

People with nystagmus were tested both using their null point and not using it. People without nystagmus were tested using both their central gaze and an off centre gaze. They were presented with movement both up and down and side to side.

Their conclusions?

The trial showed that incoherent motion perception (seeing the general direction of movement, such as when a flock of birds is in flight or a crowd of people walking in the street) was impaired in those participants who had congenital or infantile nystagmus, to the same degree in both the horizontal and vertical directions.

The null position was not found to provide significantly better motion perception, although there was a trend towards better horizontal perception at the null position than 15 degrees away from it. 

The findings could help to understand better how people with nystagmus perform daily visual activities and assist in developing new clinical visual function assessment tools for nystagmus patients. Compared to static visual acuity, motion perception can be examined to assess the real-life visual function of nystagmus more thoroughly. Questions related to visual motion perception can also be added to quality of life surveys to assess more closely real-life related visual function in nystagmus. 

Read the full scientific article online here

Simon Riggs after skydive

Fancy a skydive for the Nystagmus Network?

Skydiving is an extreme sport and not for the faint hearted, but it’s the perfect opportunity to ask your friends and family to sponsor you!

In 2018, Simon raised over £1,000 for the charity watched by friends and family, including his son, Charlie, who has nystagmus.

For more information and to set up your skydive for the Nystagmus Network, email as at [email protected].

A very young child sitting with a book.

Predicting the sight of an infant with nystagmus

Thanks to recent nystagmus research work, there is now an answer to many a parent’s question ‘How well will my child be able to see?’

A team of researchers has found a correlation between the development of the fovea and visual acuity. The development of a foveal grading system means that doctors can confirm with some certainty how well the child will eventually be able to see.

Read the full scientific paper online here

Nystagmus Network members hold up their voting cards.

Thinking of becoming a member?

There’s nothing quite like the feeling of belonging, of knowing that you’re part of a wider virtual nystagmus community and among friends, all working for the same goals as you.

That’s why the Nystagmus Network is a membership organisation.

The more people we represent who are living with nystagmus, or have an interest in the condition, the better able the charity will be to influence real change and to make your voice heard.

Find out more about membership here

a banner promoting easyfundraising, asking our supporters to help us reach our target this year.

Thank you to our easyfundraisers

Thank you Fiona, Jackie, Jane, Lyndsay, Rachel, Sofie, Sue, Tim and all our other lovely supporters for raising donations for the Nystagmus Network with easyfundraising! If you haven’t signed up yet, it’s easy and completely FREE. 6,200 shops and sites will donate to us when you use easyfundraising to do your everyday online shopping – at no extra cost to you! Every donation you raise makes a difference to us so please sign up and share today.

Join easyfundraising here

Part of the ultra challenge series logo

Join our Easter Challenge and get fit for the summer

Take on a 50 km Ultra or a historic 25km – and make it an active Easter! From the Windsor Racecourse base camp 1500 adventurers will head out on looped routes through the Great Park with fantastic views of the Castle, on to Runnymede, along the Thames Path, and take in some wonderful countryside. You’ll get full support all the way, a few post Easter surprises, a celebration finish at base camp and a BBQ meal. It’s a great way to kick off the 2022 Ultra Challenge season and to get in shape for summer. The Nystagmus Network will part fund your place.

Until 28 February 2022 you can get 50% off your registration fee when using code NYCHARITY22 on all CHARITY SPONSORSHIP places.

Select your Ultra Challenge here