Partnership with Fight for Sight

The Nystagmus Network enjoys a long standing annual grant funding partnership with leading UK eye research charity, Fight for Sight who match fund all projects.

The Nystagmus Network first joined forces with Fight for Sight under a Joint Small Grant Awards Scheme in 2015. The value of the grant is £15,000 per year. Since then the 2 charities have together funded a wide range of nystagmus research projects, working together to identify new work which has maximum impact on our community.

We shall be announcing the lucky recipients of not one, but two jointly funded small grant awards very soon. The quality of applications in 2022 was of such a high standard, we couldn’t resist funding two of them. We will share details here shortly.

Meanwhile, please read on for further details of our recent collaboration …

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.”

Funding future research

It is very positive news for the future of research for the Nystagmus Network to be funding PhDs, as it establishes a pipeline of work leading to breakthroughs into treatments for nystagmus.

Time scales

Following a rigorous application process, overseen by experts at Fight for Sight, we awarded our PhD nystagmus studentship in March 2021. The additional small grant was awarded in September 2020.

Nystagmus Network Honorary President and chair of the charity’s research subcommittee, Vivien Jones, said:

“Through the new nystagmus PhD studentship we shall be bringing new brain power at a significant level to the nystagmus research table. We are also delighted to be continuing the small grant scheme which is an effective way of supporting research projects.”

You can help us keep investing in nystagmus research by donating to our research fund.


News from 2019 …

Research funding will use iPads to identify the best method to manage Nystagmus

Fight for Sight and The Nystagmus Network announced funding for 3 exciting nystagmus research projects at the Nystagmus Network Conference, which took place in September 2018, during National Eye Health Week.

In total £30,000 in funding has been invested in projects bringing benefits to children and adults living with Nystagmus.

James Self at University of Southampton is developing a new clinical test using an iPad app to measure a patient’s ability to identify faces in a crowd, one of the challenges of nystagmus. The aim is for the app accurately and effectively to diagnose patients and ensure they are offered the most appropriate support for their nystagmus.

Dr Matt Dunn from Cardiff University is being funded to research an improved diagnostic technique for nystagmus in children. Until now the challenge for patients has been keeping their eyes still while the test is performed. Dr Dunn will investigate a new technique that can be used while the eye is also moving, which could improve the earlier diagnosis of this condition in future.

Dr Mervyn Thomas from University of Leicester has been funded to investigate how nystagmus affects the clarity of vision of children living with the condition. The results from this study could directly impact the care and management of very young children with nystagmus.

Dr Neil Ebenezer, Director of Research, Policy and Innovation at Fight for Sight, said: “We are delighted to continue our long-lasting partnership with Nystagmus Network. Nystagmus is a condition which affects an estimated 1 in every 500 children in the UK, so we hope that funding these three research projects will directly benefit patients living with nystagmus.”

Vivien Jones, President and Founder of the Nystagmus Network and Chair of the Nystagmus Network Research Sub-committee, said: “We are absolutely delighted to have made these awards to research centres in the UK.  We hope the 3 research projects we are funding together with Fight for Sight will make progress in terms of improving diagnosis and prognosis, predicting future vision in infants and young children with nystagmus and developing a vision test that can be used in clinical trials of various therapies. All these projects fit our test of improving quality of life and we are very pleased to be able to support them.”

Research funded in 2017

Diagnosing infantile nystagmus: A novel eye tracking approach

Earlier research projects the Nystagmus Network has funded

How do vision and eye movements develop in young children with nystagmus?

Why does the world look like it’s moving when it’s not, in people with some types of nystagmus?

What’s the effect of childhood-onset nystagmus on the ability to balance?