Fight for Sight – Nystagmus Network

Nystagmus Network Trustee Paul Rose and Dr Matteo Rizzi from the UCL Institute of Ophthalmology, looking at images captured with their high-speed camera.

Nystagmus Network visits pioneering research in London

The Nystagmus Network is committed to supporting groundbreaking research, from understanding the root causes of nystagmus through to managing and treating the condition.

Recently our trustees, Paul Rose and Harshal Kubavat met with Dr Matteo Rizzi to discuss his team’s innovative work at the University College London (UCL) Institute of Ophthalmology.

For those who follow the charity’s research activity, Dr Rizzi is no stranger: in 2022 he was a recipient of the Small Grant Award funded jointly by the Nystagmus Network and Fight for Sight.

The effects of nystagmus on individuals and their families can be wide and varied. For some it has a relatively low impact on daily life, while for others it proves to be a debilitating condition, making everyday activities challenging. Current research, like that carried out by Dr Rizzi’s team, is crucial in finding broader solutions that could benefit a wide range of patients.

Dr Rizzi’s research into Gene Therapy

During our visit we were shown how Dr Rizzi’s research explores the use of gene therapy to target specific retinal cells responsible for nystagmus. At their research facility they are testing new DNA sequences called “promoters”, which are designed to limit the production of therapeutic molecules to specific retinal cells. When testing this gene therapy on healthy (non-human) subjects with ‘evoked nystagmus’ (evoked by showing moving stripes on a computer screen), the gene therapy was seen to dampen and almost eliminate the nystagmus-like movements. The next step is to try this approach on subjects who have nystagmus and see whether the same effect can be seen.

From our discussions it seems a promising approach that could, in the future, offer significant improvements in vision quality for many patients. Truly remarkable! Of course, this comes with the usual caveats – this work is at the very early stages and exploratory. It takes years and in many instances decades to come to fruition, if successful. But we have a beginning!

In Dr Rizzi’s own words:

“The Small Grant Award from the Nystagmus Network alongside Fight for Sight has been unquestionably instrumental for me to start work in this space. It provided me with the resources to test out our initial thinking and has enabled us to generate hugely valuable data that we hope will contribute to a greater understanding of nystagmus, and perhaps eventually a treatment. Thanks to all those that supported our work”

IMAGE: Nystagmus Network Trustee Paul Rose and Dr Matteo Rizzi from the UCL Institute of Ophthalmology, looking at images captured with their high-speed camera (acquired through a Fight for Sight / Nystagmus Network grant) / July 2024.

The Value of Fundraisers and Supporters

Our visit underlines the importance of why continued funding for such research is vital. It not only allows scientists to explore new avenues but also helps translate these findings into something that may one day become a clinical treatment that can change lives. This is where our community of fundraisers and supporters becomes invaluable. Every donation, every fundraising event and every act of support contributes directly to advancing research that holds the potential to alleviate the challenges faced by those with nystagmus.

Fundraisers and supporters are the backbone of our charity. Your contributions provide the essential resources needed for pioneering research. For instance, the Fight for Sight Joint Small Grant Award has enabled Dr Rizzi’s team to get this far. Imagine how much further they could get with continued funding and support? Each breakthrough, no matter how small, brings us closer to finding effective treatments and improving the quality of life for those living with nystagmus.

Pride in the UK Research Community

We take immense pride in the continued support and collaboration of the UK research community in tackling nystagmus. Institutions such as the UCL Institute of Ophthalmology and Moorfields Eye Hospital have been at the forefront of ocular gene therapy research. Their integrated approach – where therapeutic strategies are developed and clinically tested within the same ecosystem – exemplifies the synergy between research and practical application. These research programmes and wider international collaborations have been instrumental in identifying the specific retinal cells involved in nystagmus, paving the way for targeted treatments.

The Journey Forward

The journey to understanding and treating nystagmus is long and complex, but with your support, we are making significant strides. The research funded by Nystagmus Network is not just about scientific discovery; it’s about bringing hope to thousands of individuals and families living with this condition.

As we look to the future we remain dedicated to supporting innovative research, fostering collaborations and ensuring that the findings of today become the treatments of tomorrow. Your ongoing support is crucial in this mission. Together, we can continue to push the boundaries of what’s possible, bringing us closer to a world where nystagmus is no longer a barrier to a fulfilling life.

Get Involved

We invite you to join us in this vital work. Whether through donations, participating in fundraising events or simply spreading the word about nystagmus. Every action makes a difference. Visit our website to learn more about how you can contribute and stay updated on the latest research developments.

Together, we can transform the lives of those living with nystagmus. Thank you for your unwavering support and commitment to this cause.

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 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.

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 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

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

Dr Rufai speaks from a podium with a large screen behind him showing slides.

Congratulations, team Leicester

Leicester research team awarded prestigious prize from the Royal College of Ophthalmologists

Image credit: Royal College of Ophthalmologists

A team of specialist eye doctors at the University of Leicester have received a national award for their work, which will improve diagnosis and management for children with nystagmus. The study was jointly funded by the Nystagmus Network and Fight for Sight.

The Royal College of Ophthalmologists has awarded the prestigious Ulverscroft David Owen prize to Dr Sohaib Rufai, NIHR Doctoral Fellow in Ophthalmology and his colleagues at the University of Leicester Ulverscroft Eye Unit.

Dr Rufai’s team were the first in the world to use handheld OCT to predict successfully the future vision of young children with congenital nystagmus.

On receiving the prize, Dr Rufai said: “It is a tremendous honour to receive this award on behalf of my team. I’m grateful to my mentors and colleagues at Leicester: Professor Irene Gottlob, Dr Mervyn Thomas and Dr Frank Proudlock. … We dedicate this prize to the wonderful children and families who supported this research.”

Read the full story on the University of Leicester website

A speaker at a Nystagmus Network research event.

Grant funding available for nystagmus research

The Nystagmus Network / Fight for Sight joint call for a small grant award in nystagmus research, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments, is now live and open for applications.

Full details, as well as the guidance document for the applicant can be found on the Fight for Sight website.

The deadline for the call is 28 July 2022.

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.”

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

Fight for Sight launches survey on impact of Covid-19 on people with eye conditions

Eye research charity Fight for Sight has launched a survey to gather broader insights into the personal impact that Covid-19 is having on people with sight loss and eye conditions.

The charity is inviting those affected by sight loss or an eye condition to participate in the survey, to help its campaign on behalf of people with sight loss and strengthen the case for urgently needed eye research funding. The survey will examine the impact that Covid-19 is having on people’s access to treatment, personal wellbeing and concerns for the future.

At the beginning of 2020 Fight for Sight carried out one of the largest surveys of people with sight loss and blindness to understand the personal impact of sight loss. With the advent of Covid-19, the charity is following up with further research to gain insight on how the pandemic has had an impact. All results will be published later in 2020.

Prior to the Covid-19 pandemic, eye research was already woefully underfunded, with only one percent of national research funding invested in eye research, even though twenty percent of people in the UK will experience serious sight loss or blindness in their lifetime. The problem is also on the increase – figures show that the number of people in Europe with the leading cause of blindness, age-related macular degeneration, is projected to hit 10 million by 2050.

Chief Executive at Fight for Sight, Sherine Krause, said: “This is a challenging time for everyone, but we know from anecdotal evidence that the current pandemic and lockdown is having a particularly harsh effect on those living with eye conditions and sight loss. We know that science ultimately has the answer to so many challenges – the power of science will help us stop the pandemic in the coming months, and we are working to ensure it will also help us stop sight loss and blindness in the future. We urgently need the input of those affected so that we can understand how they have been impacted by Covid-19 and campaign on their behalf. The findings will also help us to make the case for the importance of eye research now and in the future.”

Participation in the survey involves an online questionnaire in which respondents answer questions on how Covid-19 has impacted their lives. The survey will take no more than ten minutes to complete. Participants will help Fight for Sight in its mission to transform the eye research landscape and secure vital funding for pioneering research.

To participate in the survey, you must be aged 18 or over, living in the UK, and personally have an eye condition(s).

You can take part in the survey at this link.