Category: research

Our biggest ever investment in nystagmus research

Thanks to the generosity of our members, fundraisers and supporters and our longstanding partnership with Fight for Sight, the UK’s leading eye research charity, the Nystagmus Network is delighted to be able to announce our biggest ever funding commitment to nystagmus research.

At the Nystagmus Network nystagmus research workshop in September 2018, charity trustees asked the UK research and clinical teams what was the single most meaningful way the charity could support the further development of nystagmus research. Their answer was to fund a post doctoral post. They asked, the charity listened.

Vivien Jones, chair of the Nystagmus Network’s research committee, said: “We are delighted to be joining Fight for Sight in funding a new research doctorate post for nystagmus. This means we will be bringing new expertise into the field, which we are very pleased to do. It is the biggest investment we have made in research and we are grateful to all those who fundraise for us for helping to make this happen.”

Details of the new funded post and application process are below:

Call for the Fight for Sight / Nystagmus Network Project Grants 2019-2020
Fight for Sight and the Nystagmus Network are pleased to offer a joint Project Grant award for up to £250,000 over three years. The call is open to both clinical and non-clinical research scientists wishing to lead a research project to address sight loss associated with nystagmus. The aim of the call is to build research capacity of post-doctoral researchers.
Nystagmus is a complex visual impairment, characterised by involuntary eye movements, affecting focus and depth perception. Currently there is no cure available.

The call for preliminary Abstract Applications opens in early May 2019 via our online system grants.fightforsight.org.uk. The award is highly prestigious made on a fully competitive and peer reviewed basis. The call follows a rigorous two-stage application process. For more details of the assessment process please visit our grant making process.

Eligibility:
• Applicants must be affiliated with UK academic or medical institutions but the research can be undertaken in the UK and/or overseas.
• Applicants must have a contract of employment which extends beyond the termination date of the award
• Research addresses visual impairment associated with nystagmus

Deadlines:
The deadline for Abstract Applications is 11 July 2019. For shortlisted applicants the closing date for Full Application submissions will be 21 November 2019. The successful applicants of the 2019-2020 grants round will be notified in March 2020.

Contact Us:
For any queries relating to your proposal please contact Fight for Sight Fight for Sight: [email protected]

Nystagmus Network research conference 2019.

Nystagmus research conference 2019

The Nystagmus Network will once again be hosting a UK nystagmus research conference in 2019.

Following the success of last year’s event, attended by research and clinical teams from the Universities of Cardiff, Sheffield, Plymouth and Southampton and from Moorfields Eye Hospital and Fight for Sight, the charity will be funding a further event with a view to bringing about ever closer collaboration between teams and seeking out new and collaborative ways to make rare resources stretch even further.

As testing and detection become ever more sophisticated, it is hoped that outcomes for babies born with nystagmus will continue to improve, with effective treatments, prevention and even cure moving closer. In addition, therapies and interventions for young people and adults with congenital and acquired nystagmus continue to be explored.

This year’s conference takes place at the University of Cardiff in September. Delegates from across the UK have been invited and the charity is delighted to announce that representation from Leicester, London, Plymouth, Southampton and, of course, Cardiff is already confirmed. Clinicians, researchers and academics will be joined by Research Manager at Fight for Sight, Neil Meemaduma and those Nystagmus Network trustees who sit on the charity’s research committee.

Research teams will also attend the Nystagmus Network Open Day in Cardiff on Saturday 28 September, where they will be available to speak with delegates about their work.

Research into albinism could be good news for babies born with nystagmus

Dr Helena Lee from the University of Southampton was happy to announce this week the publication of a first paper from the OLIVIA study which shows the potential for L-DOPA treatment to improve the vision in albinism.

This means that the sight of newborn babies with ocular albinism could potentially continue to develop and improve with treatment.

Delegates at the Nystagmus Network Open Day later this year will hear first hand from Helena on the progress of her work with L-DOPA.

Meanwhile, you can read the article in full, here.

Matt Dunn headshot

Nystagmus Network funding leads to discovery of new algorithm

A paper relating to a research project by members of the Cardiff University team and others, which the Nystagmus Network funded, has been formally published this week.

The report describes an algorithm which takes an eye-tracking recording and automatically separates it into its component parts (quick phases, slow phases and foveations*), allowing several measures related to the nystagmus to be calculated automatically (including frequency, amplitude, intensity and foveation period metrics). Automatic segmentation of the waveform also provides the basis for calibration of the eye-tracker (previously this could only be done by an experienced eye movement analyst).

Matt Dunn from Cardiff says: “We hope that this algorithm will provide the basis for more accurate monitoring of nystagmus in clinics. Being able to calibrate will (also) allow people with nystagmus to use personal eye-tracking systems such as those that allow people with physical disabilities to control their computer.”

Read the full manuscript, here.

*foveation means angling the eyes to focus on an object

Proud of our track record

The Nystagmus Network has been funding nystagmus research since the 1990s and, thanks entirely to the generosity of our members, fundraisers and supporters, we continue to do so today and into the future.

Thanks to your support, our research teams have better diagnostics and a better understanding of nystagmus and how it will impact life in the future.

They are beginning to develop effective treatments to lessen the worst of the symptoms.

The next phase is to work on prevention and, ultimately, cure.

Read more here.

A Nystagmus Network research workshop

UK Nystagmus Research Meeting takes place

Researchers and clinicians representing nystagmus centres of excellence from Cardiff, London, Plymouth, Sheffield and Southampton gathered in Birmingham on Friday 28 September as guests of the Nystagmus Network ahead of the charity’s annual Open Day to plan the way ahead for collaborative nystagmus research.

Jon Erichsen and Matt Dunn from Cardiff University, Maria Theodorou from Moorfields Eye Hospital, Dominic Burdon from the University of Plymouth, Helen Griffiths and Anne Bjerre from the University of Sheffield and Jay Self and Helena Lee from the University of Southampton met to share outcomes of their recent and ongoing research in a spirit of openness and with a view to forging ahead with ever greater collaborations between the centres in the future.

Also at the meeting were Neil Meemaduma, Head of Research at Fight for Sight and Nystagmus Network trustees from the charity’s research team.

Each team went on to present to delegates at the Nystagmus Network Open Day the following day and chat with families in the Research Hub.

Fight for Sight and the Nystagmus Network were delighted to be able to announce the successful recipients of three new joint funding grants for nystagmus research at the meeting.

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

Fight for Sight and The Nystagmus Network have announced funding for three exciting nystagmus research projects at the Nystagmus Network Conference, which is taking place today during National Eye Health Week 2018.

In total £30,000 in funding will be used for projects bringing benefits to children and adults living with the condition, which is characterised by involuntary and repetitive movements of the eye.

James Self at University of Southampton will be 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 be making these awards to research centres in the UK.  We hope the three 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.”

The Nystagmus Network nystagmus research conference is taking place today.

UK Nystagmus Research Meeting 2018

Researchers and clinicians from Cardiff, London, Plymouth, Sheffield and Southampton are meeting today to plan the way ahead for nystagmus research. Our medical experts are joined by charity trustees and our funding partners, Fight for Sight.

The half day conference, hosted by the Nystagmus Network, takes place in Birmingham today ahead of the charity’s Open Day 2018 on Saturday.