A person wearing a doctor's white coat is testing a patient's eyes using clinical equipment.

The Fight for Sight/Nystagmus Network Small Grant Award

We are delighted to announce that the Nystagmus Network has jointly awarded two new nystagmus research grant awards with our funding partners Fight for Sight.

The two successful applicants are

  • Dr Mahesh Joshi at the University of Plymouth is carrying out a pilot study to investigate whether a new computer-based treatment approach can help improve vision for people with nystagmus.
  • Dr Mervyn Thomas at the University of Leicester is developing a new experimental model that could pave the way for the development of new treatments that can help improve vision for children with nystagmus.

Vivien Jones, Hon President of the Nystagmus Network and Chair of the Research Committee, said: “We are delighted to announce with our partners Fight for Sight our support for these exciting research projects. The work by Dr Mahesh Joshi and Asma Zahidi at Plymouth will hopefully significantly enhance knowledge about eye movements and, in the case of Dr Mervyn Thomas at Leicester, lead to an enhanced ability to test treatments for infantile nystagmus.”

To help ensure that the Nystagmus Network can continue to invest in nystagmus research, please consider making a donation to our research fund. Thank you.

Donate to our nystagmus research fund here

L-R Peter Greenwood, Marsha De Cordova MP (holding Nystagmus Network T-shirt, Harshal Kubavat.

Nystagmus Care Pathway published

Publication of Clinical Practice Points for managing nystagmus in childhood


The Nystagmus Network has welcomed the publication of new guidance on the management of nystagmus in children by the Royal College of Ophthalmologists.
The purpose of the Clinical Practice Points, now available on the Royal College website, is to provide a single point of reference for busy clinicians when managing patients with this complex eye condition.

The Practice Points can be found online here

The Nystagmus Network contributed to the development of the Practice Points through its membership of NUKE, the nystagmus UK eye research group. Members of NUKE worked together to develop a Nystagmus Care Pathway which sets guidelines on diagnosis and care for patients with nystagmus – the first time such guidelines have been created for this condition.

Vivien Jones, founder and Honorary President of the Nystagmus Network, said “The adoption of these guidelines means that clinicians can now refer to them when treating patients with nystagmus – something that we hope will lead to continuing improvements in developing standardisation of medical diagnosis and care.”

Clinician Jay Self, University of Southampton, an author of the Practice Points and founding member of NUKE said “Managing children with nystagmus can be complex and nuanced. By sharing best practice, in an easy to follow guide, we hope to improve all aspects of care for children and their families.”

Coinciding with the publication, Nystagmus Network trustees met Marsha De Cordova MP, who chairs the Eye Health and Visual Impairment All Party Parliamentary Working Group. Trustees were able to brief the MP, who herself has nystagmus, on the future impact of the work that has been done and the publication of the Practice Points.

Marsha is pictured above (centre) with Nystagmus Network trustees Peter Greenwood (left) and Harshal Kubavat (right).

A young person choses a book from a shelf.

Could you help shape the direction of eye research in the UK?

Eye Research Priority Survey

Your input is needed into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities* that were first published in 2013.

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly. Knowledge from having experienced your own eye health care, or the eye health care of others, is of great value to researchers. The survey feedback will inform the final “Top 10” updated priorities across different eye subspecialties.

The Nystagmus Network is keen to see Paediatric Ophthalmology and Neuro ophthalmology prioritised.

The survey can be accessed via the QR code below, using a Smartphone or other device which connects to the internet:

Or click here to take the survey

*https://www.jla.nihr.ac.uk/priority-setting-partnerships/sight-loss-and-vision/top-10-priorities/

NUKE logo

Next steps for NUKE

Your chance to influence the direction of UK nystagmus research

NUKE is the Nystagmus UK Eye research group. Members are currently researchers, clinicians, academics and patient support groups, including, of course, the Nystagmus Network.

Mission Statement

NUKE brings together the leading clinical and scientific expertise, experience and resources across the UK. Supported by patient groups we work to raise the profile of nystagmus and attract research funding. By collaborating and sharing data and ideas we aim to achieve the best possible clinical outcomes for patients, including the development of a Nystagmus Care Pathway.

As work on the Nystagmus Care Pathway is now complete, pending approval by the Royal College of Ophthalmologists, NUKE plans to work on a new project. We would like to hear your views on where to focus our energies.

To voice your priorities for nystagmus research in the UK for the next two years, please take part in this short survey. Thank you.

NUKE research priority survey here

Jay Self and Mike Larcombe at University Hospital Southampton. Mike wears a Nystagmus Network T-shirt and his Te Araroa medal.

Nystagmus Network invests £17,000 in research

Nystagmus Network trustees donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal last December thanks to the generosity of our fundraisers and supporters.

Someone who contributed more than most is Southampton-born Mike Larcombe who, in 2020 completed his Walk for Wiggly Eyes, a three and a half month long adventure following the Te Araroa pathway and then, in 2021, cycled all around Tasmania for his Wiggly Walk 2.

In total to date Mike has raised a phenomenal £6,500 for nystagmus research.

THANK YOU, MIKE!

The £17,000 is being used to fund a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and four Cervical Range-of-Motion instruments (CROM) to measure head postures.

The new equipment will be used in both the clinics and the research labs at University Hospital Southampton.

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.”

Mike Larcombe with Jay, Helena, Harsh and Sue at University Hospital Southampton.

Meet me in Southampton

This August the Nystagmus Network was finally able to meet with and celebrate the incredible achievements of a true nystagmus superhero, Mike Larcombe.

From December 2019 and for a total of three and a half months, Mike walked the entire length of New Zealand (yes! the North and the South Island!) following the Te Araroa pathway to raise funds for nystagmus research and awareness of the condition.

Along the way he endured very wet feet, a constantly rumbling tummy and often only the company of chickens!

As if that were not enough, in 2021 he was at it again, cycling (and singing!) all the way around Tasmania.

In total Mike has raised a whopping £6,500 for nystagmus research!

His feet were nice and dry this week as he chatted with Jay Self and Helena Lee, researchers and clinicians at University Hospital in Mike’s home town of Southampton along with Harshal Kubavat and Sue Ricketts from the Nystagmus Network. During their visit the group toured the clinics and research labs to find out where some of that hard earned fundraising money goes.

A postcard promoting the Nystagmus Network Open Day 2022 on Saturday 1 October in Sheffield.

Open Day 2022 – secure your ticket today!

Booking is now open for the Nystagmus Network Open Day on Saturday 1 October in Sheffield.

In the historic grandeur of the Cutlers’ Hall, hear the latest thinking on nystagmus support, research and treatment, meet clinicians face to face and ask anything you like, seek one-to-one advice on education, employment or benefits, hear fabulous speakers and, most importantly, meet people living with nystagmus.

For one whole day you don’t have to explain nystagmus!

Book your ticket here

Child with albinism.

The impact of glare on reading

Researchers are investigating the impact of glare on young children with albinism and nystagmus to help ease important day-to-day tasks like reading.

Jointly funded by Nystagmus Network and Fight for Sight, a team of researchers at the University of Leicester will be investigating glare in patients with infantile nystagmus.  

People with nystagmus often experience glare, but this has not been researched thoroughly despite the discomfort it can cause and the impact it has on reading.  

Led by Dr Frank Proudlock, the study will measure the effect of glare by testing reading overlays, tinted contact lenses and other means.

Although there are several devices that doctors use to measure glare in eye clinics, few of them have been tested as to how well they measure glare in nystagmus. Also, it is very difficult to measure glare in young children.

The team at University of Leicester will study four groups of people: people with albinism; people with idiopathic infantile nystagmus; people with achromatopsia; and people without nystagmus.

The team hopes the study will help doctors to make reliable measurement of glare in people with infantile nystagmus, especially in young children.

Understanding how glare can affect reading in people with infantile nystagmus and ways of managing it will help provide useful information to parents, teachers, doctors and patients to come up with the best solutions for reading at home, work and at school or university.

Keith Valentine, Fight for Sight CEO said:

“We’re pleased to continue our important partnership with the Nystagmus Network, funding these vital projects. With one person in every 1,500 people having nystagmus, it’s vital that we fund research that can help improve lives and make sure children and adults with nystagmus live their lives to the fullest.”

Donate to the Nystagmus Network research fund here

University College London logo

What shapes quality of life of visually impaired children and young people?

Guest post by Ana Semrov, PhD student and study researcher, Vision and Eyes research team at UCL

Childhood visual impairment can have a significant impact on a person across their whole life, affecting their social and educational outcomes, career prospects and quality of life. However, how individual children and their families adapt to living with a visual disability is very variable. 

We aim to find out what helps children and young people with visual impairment and their families adjust to living with impaired eyesight and helps them have a good quality of life. We hope this will help us to develop and improve care and support for families of children and young people with visual impairment. 

To do this, we are inviting children and young people with visual impairment and their families to take part in our study. Taking part in this study would involve both the child/young person with visual impairment and at least one of their parents/carers completing some questionnaires about topics like general health, well-being, and relationships with others.

If you would like to participate, please fill in a few questions that will tells us a bit about you to help us make sure this study is right for you. To answer these questions, please go to https://redcap.idhs.ucl.ac.uk/surveys/?s=9FNN88TLENTKY4YE.

This research is funded by Fight for Sight and Ulverscroft Foundation, awarded to Professor Jugnoo Rahi.

A group of researchers.

Perceptions of nystagmus and the impact of the Covid-19 pandemic

Impact of the COVID-19 pandemic on individuals with nystagmus
and an exploration of public assumptions about the condition: an electronic questionnaire study

The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.

In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.

Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”

Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”

Read the full research article online here

Thank you to those members of the nystagmus community who took part in the survey and shared it with their wider circles.