research – Page 6 – Nystagmus Network

Thank you, Mervyn

Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment.

Thanks to the work of Dr Melvyn Thomas and the research team at the University of Leicester there is now a validated method of predicting prognosis in children and infants with infantile nystagmus.

This development answers the question most parents of newly diagnosed babies have: How well will my child be able to see?

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Thank you, Libby

Inspired by her 2 younger sisters, who both have nystagmus, final year geography student, Libby chose to explore the experiences of young visually impaired adults in their local space and environment and the impacts on identity formation for her dissertation.

You can read more about Libby’s research here: https://nystagmusnetwork.org/can-you-help-libby-with-her-research/

Thank you for being a great ‘big sister’, Libby.

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

A woman holds her head in her hands and appears o be in some discomfort.

Living with Acquired Nystagmus and Oscillopsia?

The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together.

If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome.

At our recent virtual Open Day we were lucky enough to be joined by Professor Chris Harris, a leading UK expert in AN and oscillopsia at the Royal Eye Infirmary, Plymouth. Chris recorded a presentation for us, which you can view here and then took part in a live Q+A session with our group on 3 October.

Since then we have continued to reach out to more people living with AN and Oscillopsia so that we can support Chris in his research endeavours. We are gathering a sizeable ‘patient’ group together and are collating meaningful data on causes, symptoms, treatments (conventional and alternative therapies, helpful or otherwise) and evidence of the effects of these conditions on general wellbeing, including mental health.

We are also writing up and recording your stories and drafting a questionnaire to help us collect even more information.

All of this will enable Chris to strengthen his applications for further funding for research into these debilitating and often life-changing conditions.

If you would like to be included in invitations to all future zoom get togethers for people living with Acquired Nystagmus and Oscillopsia, please contact us here.

At our most recent online meeting we were joined by people with experience of new drug and surgical treatments.

Our next call will be in January when we will share an update on the work we have done so far in our evidence gathering.

If you would like to join our virtual AN support group, please contact us here and we will be happy to introduce you.

Please do help us with this exciting new project. We look forward to having you with us.

New nystagmus research

We are excited to announce the start of a new research study into nystagmus

The aim of the study is to gather evidence about people’s perceptions of nystagmus. The results will help shape further nystagmus research and awareness raising strategies, eventually contributing to better understanding of the condition and improved quality of life as a result.

Anyone can take part in this research, whether they have nystagmus or not, know someone who has the condition or, even more importantly, have never heard of nystagmus before and don’t know what it is.

Participants just need to take a survey which will collect responses anonymously. Members of the nystagmus community helped devise some of the questions.

The survey takes 5 minutes to complete. Please take part today and then share the link with your friends, family, colleagues, whoever you can think of, especially with people who may have never heard of nystagmus before.

The more people who take the survey, especially people who don’t know about nystagmus already, the better information we will gather.

Take part in the survey here

Thank you.

Chris Harris sits behind a microphone and prepares to speak.

Do you have Acquired Nystagmus or Oscillopsia?

We need you!

The Nystagmus Network is supporting Professor Chris Harris and his team at the Royal Eye Hospital, Plymouth to investigate further Acquired Nystagmus and Oscillopsia.

If you have either or both, we’d love to hear from you. You can help us develop a further research study into these complex, life changing conditions.

We can also offer you support.

Please contact us today

Watch a video message from Chris here

Join our AN Facebook group here

A screenshot of the Nystagmus Network UK research workshop on zoom, showing thumbnail images of 20 delegates.

Nystagmus Network hosts UK research workshop

On Friday 2 October, the Nystagmus Network once again hosted the annual UK nystagmus research workshop.

This is an opportunity for researchers, clinicians and academics to get together to share their work and plan greater collaboration. They are, after all, all working towards the same goal. The workshop took place via zoom.

Nystagmus Network trustees and staff were delighted to be joined by nystagmus experts from

The School of Optometry and Vision Sciences, Cardiff University
The Ulverscroft Eye Unit, University of Leicester
Moorfields Eye Hospital, London
Royal Eye Infirmary, Plymouth
Academic Unit of Ophthalmology and Orthoptics, University of Sheffield
University of Southampton and Southampton General Hospital

Can you help Libby with her research?

Introducing Libby

I am a geography student studying in my final year at Loughborough University.

I am seeking participants for my dissertation study which aims to explore the experiences of young adults (18-25) in their local space / environment & the impacts on identity formation.

This study is inspired by my two younger sisters, who both have nystagmus.

I am seeking individuals who would be able to offer me an hour of their time to chat and discuss their experiences of entering the ‘adult world’ with a visual impairment. I am open to hear about experiences of people who use visual aids and those who choose not to.

The aim is to increase awareness of the daily experience individuals with VI have, be that positive or negative.

I am currently seeking around 5-6 participants aged 18 to 25.

Due to COVID-19, I am unable to meet individuals in person.

To find out more or to take part, please email Libby at [email protected]

Disclaimer: This study has full ethical clearance and is fully insured by Loughborough University.

Congratulations, Nikita

On World Sight Day 2020, the Nystagmus Network is delighted to celebrate the achievement of Nikita Thomas who has been named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness).

Nikita, who works in nystagmus research at the University of Cardiff, was nominated by the Nystagmus Network and has achieved her award in the ‘Innovators’ category.

Innovators embrace new ideas and create new possibilities and outcomes. They challenge the status quo and push the boundaries of knowledge to develop new approaches, systems or appropriate technologies in eye health.

Cited for her innovative developmental work in the field of perimetry, Nikita says: “I have a deep-rooted passion for creating solutions that promote equality of access to standard optometric and ophthalmic clinical practices across different patient groups. This has involved transforming the commonly used method of visual field testing into a method that allows for accurate examination of the visual field in patients with voluntary and involuntary unstable fixation, such as nystagmus. I love that my role offers the freedom and flexibility to fully explore my own concepts and ideas, as well as the potential to make a worldwide impact on established clinical procedures.”

The Nystagmus Network added: “Always engaging, professional and knowledgeable, Nikita Thomas is a very popular research delegate at the annual Nystagmus Network Open Day and a poised and eloquent presenter when delivering presentations to members of our patient group.”

Her academic supervisors at The School of Optometry and vision Sciences at Cardiff University said: “Nikita’s work promises to have a significant impact on both the delivery of clinical eyecare and our understanding of the development of the human visual system.”

Congratulations, Nikita!

Read Nikita’s full IAPB citation here

Ifigeneia stands in front of a whiteboard in a lecture theatre.

Research participation opportunity for 12-14 year olds

Ifigeneia Manitsa is a Psychology Researcher and Assistant Lecturer at Kingston University. She is currently conducting the last two studies of her PhD which is focused on the academic and social inclusion of adolescents with and without visual impairments!

If a student wants to participate in both studies, they will be asked to complete three questionnaires focused on their relationships with their teachers and peers and on their school engagement (students with visual impairments will need approximately 30 minutes for this). In addition, their favourite teachers/teaching assistants will be asked to complete a short online questionnaire about these students’ academic inclusion and their parents will be asked to complete a short online questionnaire too.

Ifigeneia is also very interested in recruiting some more teachers who will share with her their perceptions towards the inclusion of students with visual impairments. She is more than happy to send you the information sheets and consent forms if you want to have a look! If there are any families/students who wish to take part in only one of these studies, she is more than happy to include them only in one study.

Ifigeneia is happy to “meet” students and their families via Skype/Zoom.

She would also like to mention that the research has received a favourable ethical opinion from the Research Ethics Committee of the Faculty of Business and Social Sciences at Kingston University London. This is to ensure that the dignity and well-being of participants is respected. She also obtains DBS certification which is automatically renewed every year.

If you would like to know more about the study or Ifigeneia’s work, please contact us.

If you would be interested in taking part in the study, please complete the form below. Thank you.

Technology use in young people with impaired vision

Guest post from Saima Begum, University College London

I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment.

This project aims to examine technology use in young people with vision impairment, and whether this influences their educational attainment.

There is much research that has found that technology such as screen-readers on phones have been useful for people with vision impairment to be able to function in everyday life, so my project is aiming to look at whether technology use can also have positive effects on education.

Moreover, because of the increasing use of social media, I plan to look at whether technology use can have a positive effect on friendships. This data is important to collect as it will show how young people with VI use technology, and how this could be utilised so they perform better in school.

Participants are invited, between the ages of 11 and 18.

All questionnaires can be completed online, and participants can do this from the comfort of their own homes.

Click or tap here for the questionnaire

The questionnaire is accessible for screen readers. The first page of the questionnaire also includes an information sheet with more details regarding the project.