UCL – 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.

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.

Child wearing a Nystagmus Network T shirt and holding a mascot.

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

Guest post by Ana Semrov, UCL GOS Institute of Child Health

We are looking for volunteers to take part in our study called: What shapes quality of life of visually impaired children and young people.

What is the study about?

What would I need to do?

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.

Who are we looking for?

We would like to hear from you if you are

Someone living in England or Wales
8 to 18 years old
Have visual impairment caused by any medical condition

OR you are

Parent or caregiver of a child aged 8 to 18 years who has visual impairment

I’m interested! What should I do now?

First, we kindly ask you to 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 scan the QR code below or go to https://redcap.idhs.ucl.ac.uk/surveys/?s=9FNN88TLENTKY4YE

If you have problems accessing the weblink provided above, or if this sounds like something of interest of you but would like to hear more first, please let us know by calling: 020 7905 2241, or email: [email protected].

Thank you for considering taking part in our study.

Yours sincerely,

Ana Semrov (Study Researcher), Life Course Epidemiology and Biostatistics,
UCL GOS Institute of Child Health, 30 Guilford Street, London, WC1N 1EH;

020 7905 2241 : [email protected]

Professor Jugnoo Rahi (Professor of Ophthalmic Epidemiology), Life Course Epidemiology and Biostatistics, UCL GOS Institute of Child Health, 30 Guilford Street, London WC1N 1EH;

020 7905 2250 : [email protected]

Walk with us!

There’s still time to register to join Team Nystagmus Network to walk Eye to Eye at 11am on Sunday 10th March. You can choose to walk the 4 or 14 mile route.

Team Nystagmus Network sets off at 11am.

Who’s on the team?

Join Ella and Sam, Andy and Heidi, Andrew, Orla, Nikki and Tremaine, Marc, Mila, Carmen, Imma, Becky, Maria and Katie, Trudy and team ‘Oscar’, and not forgetting Frances. So far these wonderful people have already raised a massive £5,000 for nystagmus research at Moorfields and UCL. Please come and join them and help boost their total even higher. Together, we can make a real difference.

Nystagmus Network trustees will be at the starting point to wave you off and will be walking the route with you, too.

Set up your Justgiving page

Click here to join the team today then set up your Justgiving page and link it to the Nystagmus Network to ensure that every penny you raise goes to nystagmus research.

THANK YOU!

Matt is joining the abseil

Matthew Dawson will be abseiling down the UK’s allest piece of public art on 23 September to raise much needed funding for nystagmus research at Moorfields and UCL. He is joining Team Nystagmus Network Abseil at the suggestion of his wife and for his young son, Owen, who has nystagmus.

Apparently, some of Matt’s sponsors have asked him to wear fancy dress for the abseil. Maybe he will if his sponsorship total gets high enough!

Please sponsor Matt if you can.

Vicky and Claire show amazing support

Vicky and Claire are both trustees of the Nystagmus Network. That’s not all they have in common!

On 23 September they will both be scaling down the Olympic Park Orbit alongside their Team Nystagmus Network Abseil team mates.

They’re doing it to raise funding for nystagmus research. Every penny they raise will go directly into pioneering work at Moorfields Eye Hospital and University College, London.

You can help support them by visiting their Justgiving pages.

Click here to sponsor Vicky and her husband, Richard.

Click here to sponsor Claire.

Thank you both. We’re all so proud of you!

Children can try programming

A research associate at the UCL Interaction Centre is working on a project that seeks to develop an accessible toolkit to enable children with different visual abilities to write basic computer programmes through the manipulation of physical objects. Would your child like to take part in a 2-hour session where, together with a peer of their choice, they will have the chance of interacting with the prototype and carrying out some music-based programming activities?

Please see flyer for details.

New research project on visual crowding in CIN

A new research project is being undertaken at Moorfields Eye Hospital and University College London. The aim of the study is to understand better the visual abilities of people with congenital nystagmus, with a particular focus on visual crowding, a phenomenon which occurs when an object that is visible in isolation becomes impossible to recognise when surrounded by other objects.

The Nystagmus Network is supporting Mr Vijay Tailor, Paediatric Clinical Trials Research Orthoptist and Clinical PhD Training Fellow, to recruit suitable participants.

Subjects should have a formal diagnosis of Congenital Idiopathic Nystagmus and be aged 18 to 50.

People who also have albinism or strabismus amblyopia (‘squint’ or ‘lazy eye’) are not suited to this particular study.

If you have short or long sight, this is not a problem provided you wear prescription glasses or contact lenses to correct this.

If you would like to find out more about the research project and apply to take part then please complete and submit the form below. By completing the form you are giving us permission to pass on your details to the relevant research team.

Thank you.