The logo of the University of Plymouth.

Research participation opportunity in Plymouth

Perceptual Learning for Nystagmus

We are delighted to offer people who have nystagmus the opportunity to take part in an exciting new research study at the University of Plymouth, in collaboration with Cardiff University and jointly funded by the Nystagmus Network and Fight for Sight.

Who are we looking for?

Anyone aged between 18 and 35, diagnosed with Infantile (Congenital) Nystagmus

What will you be doing?

  • Complete vision tests on computer at the University of Plymouth to assess how well you can see static and moving letters and static dots
  • Complete vision training at home for 1 hour per day, 3 days a week over a period of 4 weeks

Who are we?

Dr Mahesh Joshi

Dr Mahesh Joshi

Dr Asma Zahidi

Dr Asma Zahidi

For more information, please contact: [email protected] or [email protected]

Travel Expenses

We will be paying your travel expenses to Plymouth up to £50.

Fight for Sight and Nystagmus Network logo.

Call for research grant applicants

The Nystagmus Network is delighted to announce that we are again partnering with Fight for Sight this year to offer the Small Grant Award Scheme. The grants are available for clinical research addressing visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing/analysis or treatments.

We are delighted to inform you that the scheme is now open for applications, with the deadline of 13:00 on Wednesday 13 September 2023.

This year we particularly welcome applications from Early Career Researchers.

  • Small Grant Awards are intended to support early career research, which should be used to collect preliminary/pilot data to make research ideas more competitive when developing larger follow-on funding applications. These awards offer competitive funding of up to £15,000 to clinical or research scientists to conduct stand-alone research projects for up to 12 months.
  • Please visit the Fight for Sight website for more details, including in depth guidance, and to access the online grant management system.
  • For any queries during the process, please email [email protected].

You can contact us if you require any additional information, and we look forward to working with you through the process.

A close up of someone wearing eye test glasses and the words 'Funding visual impairment a landscape view'.

A new report highlights the need for more investment in sight research

Nystagmus Network’s Sue is proud to have played a small part in the work behind a new report, published by NPC today, into the lack of funding for visual impairment.

The key headlines of the report:

Our message 

  • Funders should give more money to medical research and systemic change to achieve greater long term impact for people living with sight loss. 
  • Eyesight is the sense people fear losing the most. Many consider it to be unpreventable, untreatable, even inevitable, meaning treatment is often sought too late. By giving more to medical research and working towards societal and policy change, funders could achieve greater long term impact for people living with sight loss. 

Philanthropy context 

  • At present, most money goes to services which improve quality of life – just 3% goes to research. These services are vitally important, but we shouldn’t neglect medical research and working towards systemic change – especially early stage research and areas where there is little profit incentive for pharmaceutical companies. 
  • Most charitable funding for visual impairment comes from legacies, fundraising appeals, subscriptions, government contracts, and the Lottery. It does not seem to be a popular cause among trusts, foundations, or philanthropists, with very few dedicated funding streams. More philanthropic funding therefore has the potential to make a huge difference in this sector. 
  • Giving more to medical research and systemic change needn’t be at the expense of frontline services. The visual impairment charity sector is small compared with other health sectors. The combined income of its top 16 charities is less than that of the single biggest cancer charity. There’s plenty of room for growth. 
  • We’ve published this review of the visual impairment sector to help funders better target their giving. For any issue you need a healthy balance between reactive and preventative work. There is a trade-off between having a relatively certain impact on a small number of people in the short term and having a much less certain impact on a huge number of beneficiaries (at the medical, society, or policy level) in the long term. 

Policy context 

  • The overall visual impairment sector in the UK is complex, overlapping with different aspects of the healthcare system, social care, and many other sectors – and there is no national strategy for eyecare.  

Facts about visual impairment 

  • More than two million people in Britain live with sight loss severe enough to significantly impact daily life, with the number expected to double by 2050. Of this, around 340,000 are registered blind or partially sighted. The leading causes are age-related macular degeneration (48%), glaucoma (16%), cataract (12%), retinitis pigmentosa (10%), and diabetic eye disease (8%). 

About this research 

  • This research covers six areas where philanthropic funding could make a difference: children and young people, working-age adults, older people, mental health and isolation, disabilities and learning difficulties, and medical research. It examines what the NHS and local government are already doing, and where philanthropy can add value. 

Download the full report here

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

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

Coventry University logo

New research explores parental experience of their child’s diagnosis

What is the psychological impact on parents immediately following a child’s diagnosis of congenital sensory impairment?

Rebecca Greenhalgh, Trainee Clinical Psychologist at Coventry University is leading a new research project, funded by Coventry University, School of Psychological, Social and Behavioural Sciences, designed to gain a better understanding of parents’ experiences immediately following their child’s diagnosis with a sensory impairment. It’s hoped that this information will help medical staff, midwives, psychologists and social workers provide better support during the period of the diagnosis.

The research was granted ethical approval by Coventry University’s Research Ethics Committee.

Participants will be interviewed by the lead researcher and be asked a number of questions about their experiences of receiving their child’s diagnosis of congenital sensory impairment, including speaking about how they felt at the time, what their thoughts were and their immediate reactions.

The interview will last between 60 and 90 minutes and will take place either remotely via a secure online platform, or face to face, according to participants’ preferences.

If you would like to take part, please contact the lead researcher Rebecca Greenhalgh (see contact details below). You will receive participant information and be asked to complete a consent form before taking part.

Researcher contact details:
Lead Researcher
Rebecca Greenhalgh, Trainee Clinical Psychologist
Email: [email protected]

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.

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