Richard Osman talks about nystagmus, his career in TV and focusing on the positive in this interview for In Touch from 2014.
Thank you, Richard, for choosing to help the Nystagmus Network support the nystagmus community.
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.
Nystagmus doesn’t stop me …
The theme of the Nystagmus Network virtual Open Day 2020 is the phrase ‘Nothing will stop us!”
That’s because we believe that nystagmus needn’t stop you from doing (almost) anything you want to do.
So this month we’re running our Open Day 2020 COMPETITION!
To enter, all you have to do is show us what nystagmus doesn’t stop you from doing. Your competition entry can take any form you like. It can be
a poem
a short story
a photograph
a drawing
a voice recording
a video clip
Send your entry with your name, age (if under 16) and the message “Nystagmus doesn’t stop me …” to [email protected] by no later than Saturday 31 October. The best entries will feature on our website and on our social media.
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
SEND within a COVID-19 pandemic
In his presentation for the Nystagmus Network virtual Open Day 2020, Kevin McManamon, Senior Associate, Educational Team, Geldards LLP sets out the current position of SEND support in schools in England and Wales.
To view Kevin’s and all the other presentations, please register here
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.
Nystagmus Network launches Nystagmus Youth
As part of the Nystagmus Network virtual Open day 2020 and as a new initiative to get younger people involved with the Network, the charity is creating a new online community for young people living with nystagmus.
This community begins on Instagram and is a place for young adults and teens to share their stories, read about others with nystagmus and feel empowered about their lives.
They can get top tips, access useful content that is shared with the main Network and see funny and relatable posts.
Mainly, they can find out about other people their age growing up with nystagmus and see that they are part of a huge community.
There will be regular posts to share events as well as interactive stories for you to ask questions and get answers from experts and your peers.
It’s an accessible place for everyone.
Please do share this with any young people you know, follow us at @NystagmusYouth and message us if you’d like to be involved in sharing your own story.
This account was set up by two Nystagmus Network volunteers: Ahrian Taylor and Jaina Patel.
Follow @NystagmusYouth here
Come along to the forum
As part of the Nystagmus Network virtual Open Day 2020 we will be hosting a series of zoom chats on Saturday 3 October.
For parents
There will be a virtual parents’ forum at 2pm. Share experiences, make new friends. This session will be led by Marie Travers, herself the parent of a child with nystagmus.
For adults with congenital nystagmus
There will be a virtual adults’ forum for people living with congenital nystagmus at 3pm. Meet others, make new friends, share experiences. This session will be led by Daniel Williams, an expert in accessible employment who himself lives with sight loss.
For adults with acquired nystagmus
Professor Chris Harris from the Royal Eye Infirmary, Plymouth will be answering your questions on Acquired Nystagmus and Oscillopsia at the virtual adults’ forum for people living with acquired nystagmus at 4pm.
Visiting a High Street Optometrist
What happens when you’re discharged from the hospital eye clinic and need to visit an optician’s on the High Street?
Can staff on the High Street really support you with your sight if you have nystagmus? Can they prescribe the right glasses or contact lenses for you?
In their presentation for the Nystagmus Network virtual Open Day 2020, Optometrist, Sarah Arnold and Dispensing Optician, Jayshree Vasani answer these and many more of your questions about the services available at your local optician’s.
Register here to view all Open Day presentations
Sometimes we all need more marshmallows
In her presentation for the Nystagmus Network virtual Open Day 2020, Alison Blackman QTVI will talk about resilience and how to boost it.
Resilience is the ability to overcome adversity, reduce stress and bounce back from setbacks. In her presentation, Alison explains how to boost resilience in young people with nystagmus.
She talks about the need we all feel from time to time to have an extra layer of padding around us to keep us feeling confident and protected.
Find out how you can help a young person with nystagmus feel more like marshmallow man.