A poster about the Cascade research project. Details in the blog post.

Take part in the Cascade project

A research team at Anglia Ruskin University is recruiting parents to take part in their latest research project. Here’s the team to introduce it:

We’d like to let you know about a new project we are carrying out with children with visual impairment and their parents. You can use the QR code on the advertisement above and below to have a look at our website. The project is piloting a parent-led 6-week programme that we have designed, which focuses on enhancing creativity, social interaction, communication and spatial awareness.

Research reports that children with vision impairment (VI) can benefit from additional
support in the areas of social interaction, communication, creativity, and spatial
awareness. Unfortunately, until now little work has been done to examine whether an
intervention programme can bring about positive outcomes in these areas. As all of
these areas are essential for the overall development of children, it is crucial that
research focuses on increasing these abilities in children with congenital visual
impairment.

To increase exposure to these important everyday skills, the research team
has devised a caregiver-led intervention program lasting for 6 weeks and conducted
fully online. During the 6-week programme, the child and a primary caregiver
(parent/guardian) will be provided access to an App that will guide them through
different topics explored in the CASCADE project. As the caregiver and child complete
different lessons on the App, the caregiver will be prompted to complete a series of
more independent activities with the child to rehearse these skills (i.e., role-playing). The App will also provide easy mini games for the child to complete – these have been
created with the aim of being a fun, interactive way to practice these important everyday life abilities.

We are looking to recruit parents of children of primary school age (6 to 11/12 years) with logMAR greater than 0.7, with relatively fluent language ability and no additional complex needs. If you are a parent or caregiver of a child that you think might be eligible and you are interested to know more, please email Martina at [email protected].

We very much appreciate your interest in the project and we look forward to hearing from you.

Elena Sakkalou and Martina Finessi

This project will be part of Martina Finessi’s PhD thesis. Her supervisors
are Dr. Elena Sakkalou, Dr. John Lambie, and Prof. Naomi Dale.

Please help Asmaa with her research

Asmaa is a postgraduate research student at the University of Sheffield. She’d love you to take part in her current study. Here she is to introduce it:

“Hi, I’m Asmaa, an eye doctor from Egypt. Throughout my career, I’ve met a lot of people with low vision for whom we have minimal low vision clinical and support services. My passion to help them and start a low vision clinic at my University Hospitals in Egypt has led me to Sheffield to explore the available services for young people with low vision here in the UK, so that I can help my patients when I return home. Your experience with these services and your ideas for service improvement will help me a lot with my new service in Egypt.”

“If you are interested in sharing your experience in an online interview, and you are aged between 16 and 25, please contact me:

[email protected]

or just follow the link below to indicate your interest and I will email you our research study details.

https://docs.google.com/forms/d/1-kz2UapQ_HsTbO8Vnk8Eycy3W_zY5ZsZlZBLsiCTtGA/edit

You can also read our study announcement below just in case you need more details.”

Your experience matters and would help us improve low vision services for children.If you are a vision-impaired person, aged between 16 and 25,
and have accessed UK- based eye clinic and low vision services as a child or young adult, we would like to invite you to take part in a research project.We want to understand the impact of paediatric low vision clinical services from your point of view. We would like to invite you to talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.

For more details, contact Asmaa Elgohary

[email protected]

Or follow this link:

https://docs.google.com/forms/d/1-kz2UapQ_HsTbO8Vnk8Eycy3W_zY5ZsZlZBLsiCTtGA/edit

Care givers survey

Participants needed for research into the effects of the pandemic on those caring for and supporting people living with a visual impairment

The Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London are looking for volunteers, aged 18 or over, who provide care and support to an individual living with a visual impairment in the UK to take part in a study investigating the effects of the pandemic on those with a visual impairment, their caregivers and those providing low vision services to them; and how lessons learnt can inform future low vision services and support.

As a study participant, you are invited to complete a questionnaire about your experiences and views about how the pandemic affected you as a caregiver for an individual living with a visual impairment. The questionnaire is written, and the responses are required, in English. The questionnaire in available on line here.

If you prefer, Word document attachments of the questionnaire can be e-mailed to you or a paper version is available.

Questionnaires would be expected to take 10 – 15 minutes to complete.

In appreciation of your participation, you would have the opportunity to be entered into a prize draw for a £50.00 Love2Shop Gift Card.

For more information about this study, or to volunteer to take part,
please contact: Liz Frost at [email protected]

This study has been reviewed by, and received ethics clearance, through the Optometry Proportionate Review Committee, in the School of Health Sciences, City, University of London (ETH2022-0840).

Quality of Life Research

Acumen are currently organising research in the UK on behalf of a national sight loss charity to test a quality of life measure that is currently being developed. For the survey they are looking to blind and partially sighted people.

The quality of life measure will help the charity assess the ongoing wellbeing of people in relation to the services they use. All responses will help to refine the questions as necessary.

The research involves a 15 minute online survey and anybody contributing will receive £10 as a thank you for their time.

People interested in the study should follow the link below to complete the screening questions to register interest:

https://survey.researchopinions.co.uk/index.php/482932?lang=en

Acumen will then send the full survey details should people meet the criteria for the study. In this email everybody will receive a unique ID number so that they can record the response and provide the incentive upon completion.

The main criteria for people to be eligible for the study is that they are registered partially or severely sight impaired.

The Nystagmus Network has checked with Acumen that this research is backed by a bona fide institution, that there are no commercial interests and that data with be correctly stored and privacy protected.

The abseil is this weekend!

This Sunday morning Claire A, Claire B, Glen, Matt, Richard B, Richard P, Tom, Vanessa, Vicki and Vicky will be scaling down the UK’s tallest piece of public art, the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park to raise money for nystagmus research at Moorfields and University College, London.

Our 10 intrepid Team Nystagmus Network abseilers were set a sponsorship target of £250 each. At the time of writing they’ve already far exceeded that target and look set to be able to make a real impact on funding for nystagmus research over the coming months.

We wish them all well on behalf of the entire nystagmus community.

Good luck, everyone!

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.

Glen’s taking the abseil challenge. Could you?

Glen is a member of the Nystagmus Network and a true friend of the charity. We were privileged to meet him last year when he led a workshop at Open Day on building social networks. You can read all about Glen’s adventures as a successful young man about London, who just happens to have aniridia and nystagmus, on his blog, Welleyenever.

Now Glen is taking the ultimate challenge for nystagmus research. He’s gong to be abseiling down from the 262 feet high viewing platform at the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park. It’s an exhilarating descent to the ground and Glen’s really looking forward to the breathtaking views across London.

You can join Glen for the Team Nystagmus Network Abseil. Contact us today for details.

To sponsor Glen, please visit his Justgiving page. Thank you!

Claire’s taking the leap for nystagmus. Want to join her?

Introducing Claire, the next member of Team Nystagmus Network Abseil. Claire is a keen rock climber, so abseiling her way down the ArcelorMittal Orbit is going to be a walk in the park! She’s doing it all to raise money for nystagmus research at Moorfields and UCL.

If you’d like to join Claire, please contact us today!

To sponsor Claire, please visit her Justgiving page. Thank you!

Nystagmus in the open and the Big Blind Walk

On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk?

On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 John O’Groats Trail. If you can be there to cheer him on, please let us know and we will send you a free Nystagmus Network T-shirt to wear.

Julian is walking to raise £300,000 for sight research. That will be good for all of us. He deserves our support.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Characteristics and Impact of Nystagmus in Children With and Without Down’s Syndrome Research Study

A study by the Down’s Syndrome Vision Research Unit and Research Unit for Nystagmus (RUN), School of Optometry and Vision Sciences are looking to recruit children to take part in a research study.

What is involved?

Your child’s vision will be tested by a qualified optometrist in the Special Assessment clinic. This will take approximately 30 minutes to 1 hour. An eye movement recording will then be performed using an infrared eye tracker while your child look at some cartoons!

Sign up

If you would like your child to take part, please complete your details below and the team will be in touch. By completing the form you are giving us permission to pass on your details to the relevant research team.