Tag: nystagmus research

A flyer including details of Symposium2022

#Symposium2022

Researchers, clinicians and students working in the field of nystagmus research are invited to attend this free international event, hosted by the Nystagmus Network on Friday 24 June 2022.

Abstracts submissions

If you would like to deliver a 15 minute presentation on your work in nystagmus, please submit an abstract. We welcome topics leading to the advancement of our understanding of nystagmus, including (but not limited to) diagnostics, genetics, treatments and therapies, management and support.

300 words max
no later than 30 April email: s[email protected]

Successful applicants will be required to deliver a 15 minute presentation of their work, in person or online, and be prepared to answer questions. Presentations should be in PowerPoint.

Registration

Delegates are invited to attend in person or online. There is no registration fee, but please note that you are required to cover all your own expenses if attending in person. Please register below. Thank you

Please note that this event is strictly for researchers, academics, clinicians and students in the field of nystagmus research only – thank you.

Register here for Symposium2022

A postcard with pictures of people walking and the words Nystagmus Network walk 500 miles for nystagmus research.

Could you help us walk 500 miles?

If 50 people each walked 10 miles and raised £100 in sponsorship, that would be £5,000 for nystagmus research.

Why 500 miles?

That’s roughly the distance you’d cover if you walked from one UK nystagmus research centre to all the others. Let’s see if we can do it!

Starting at University Hospital, Plymouth, calling at The University of Southampton, Cardiff University, Moorfields, London, The University of Leicester, you’d eventually arrive at the University of Sheffield some 565 miles later. But you can walk just 10 miles.

What would £5,000 buy?

Here’s a list of just some of the things Nystagmus Network trustees could invest £5,000 in:

  • diagnostic equipment for use in a research or clinical setting
  • an academic post to focus on an aspect of nystagmus
  • a brand new in person nystagmus research trial

How to set up your 10 mile walk

  1. Decide on your route – you can build up your 10 miles with lots of shorter walks over several days
  2. Set up your Justgiving page for your sponsors here; we’ll help you promote it
  3. Download a sponsor form here for your offline donations
  4. Tell all your friends and family about your walk
  5. Tell the Nystagmus Network!
A graphic of Mike dressed as the wiggly eyed warrior.

Our £17,000 investment in research

Nystagmus Network trustees have donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal.

The money will be used to purchase a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and 4x Cervical Range-of-Motion instruments (CROM) to measure head postures.

Patients with Nystagmus typically move their heads to access the best angle for their sight
and measuring this activity will provide further data to study this condition.

The new equipment will be used in both clinical and research settings and enable the Southampton team to access further research funding.

Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”

Trustees were able to make this investment thanks to the generosity of the Nystagmus Network’s supporters and fundraisers, notably Southampton-born Mike Larcombe who, in 2021, completed his Wiggly Walk 2, a cycle ride around Tasmania, and raised a further £1,000 in sponsorship. Thank you, Mike.

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

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

A graphic of Mike dressed as the wiggly eyed warrior.

Wiggly Walk 2

The amazing Mike Larcombe, nystagmus champion extraordinaire is at it again!

You will remember, of course, that in 2019/2020 Mike walked the entire length of New Zealand to raise awareness and funds for nystagmus research.

New to Mike’s story? Catch up on the all the highlights here

This New Year sees Mike embark on another ‘out of this world’ challenge.

Never one to let the grass grow under his feet, Mike, the self-styled “wiggly eyed warrior” in reference to his own nystagmus, is embarking on Wiggly Walk 2. The new ‘walk’ is actually a bike ride – around the entire island of Tasmania.

Mike says: “I will be riding a bicycle around Tasmania for Nystagmus Network because together we can help find a cure for nystagmus”.

Find out more about Wiggly Walk 2 here

Jon Erichsen speaks with delegates at a Nystagmus Network Open Day.

Take part in research at Cardiff University

Professor Jon Erichsen and his team from the School of Optometry and Vision Sciences, Cardiff University, Nikita Thomas, Katherine Ward and Onyeka Amiebenomo invite you to take part in nystagmus research.

Following their demonstrations at virtual Open Day 2021 of various nystagmus and eye tracking studies currently being carried out, you are warmly invited to apply to take part.

If you’re interested, please complete the form below. We will pass your details on to the Cardiff University team, who will be in touch with you.

The logos of Fight for Sight and the Nystagmus Network

Two new nystagmus research projects funded

Fight for Sight and Nystagmus Network are funding research into the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition. People with nystagmus often experience glare, but until now this has not been researched thoroughly.

The team at University of Leicester, led by Dr Frank Proudlock, will study 4 groups of people: with albinism; with idiopathic infantile nystagmus; with achromatopsia; without nystagmus. They aim to determine the most effective way to measure glare, its impact on reading and whether tinted glasses or reading overlays can help. It’s hoped that a better understanding of the impact of glare will help parents, teachers, doctors and people with nystagmus to come up with the best solutions for reading in their education, work and day-to-day life.

A further small grant award to Leicester

Dr Mervyn Thomas, also of the University of Leicester, has won the Fight for Sight/Nystagmus Network funded small grant award for a nystagmus related research project. The work, delayed from 2020 due to the COVID pandemic, will now start later this month.

Vivien Jones, chairman of the Nystagmus Network’s Research Committee, said: “The Nystagmus Network is delighted that its joint funding relationship with Fight for Sight has led to two awards – first to Frank Proudlock for his winning bid for a PhD student post. We greatly look forward to seeing important research flow from this appointment, which will start later this year and represents the biggest-ever single investment by the Nystagmus Network in research. We are equally pleased to see that Mervyn Thomas has won the small grant award for his proposal to develop a low-cost system for the recording and analysis of eye movement characteristics, suitable for clinic-based assessments.”

The logos of Fight for Sight and the Nystagmus Network

Nystagmus research grant funding open for applications

The next round of small grant awards for nystagmus research is now open for application. The grant, funded jointly by Fight for Sight and the Nystagmus Network is worth up to £15,000.

The Fight for Sight / Nystagmus Network Small Grant Award One award to support clinical research to address visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.

Applications close on 5 August.

Find out more here