Twelve year old Georgie will be baking 100 cookies in honour of the memory of Captain Sir Tom Moore this weekend. That’s her #CaptainTom100 challenge to raise funds for the Nystagmus Network.
We’re so grateful for your support, Georgie. We know those cookies are going to be yummy!
To honour the memory of Captain Sir Tom Moore and his amazing fundraising legacy, Leon will be running 100 kilometers over the three day weekend to raise money for the Nystagmus Network research fund.
Thank you so much for your support, Leon and all the very best for your challenge.
The Nystagmus Network is sending huge congratulations to the newly qualified Dr Nikita Thomas. Dr Thomas achieved her PhD this month.
Nikita is well known to members of the Nystagmus Network for her engaging personality and confident presentations on her latest nystagmus research.
On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). She was nominated by the Nystagmus Network and her senior colleagues at the School of Optometry and Vision Sciences, Cardiff University for her innovative work in perimetry.
We’re sure that Nikita has a brilliant nystagmus research career ahead of her. With her PhD behind her she can now concentrate on her post-doctoral career.
Nikita says: “I never thought this day would actually come! I passed my PhD viva and I’m officially Dr Thomas. I was just an average kid at school who raised eyebrows when she chose science at A-levels, and now I’m a fully-fledged scientist. Amazing feeling.”
Congratulations, Dr Thomas!
It’s long been understood that people with nystagmus can struggle to pick out objects from an image or face in a crowd. That’s a phenomenon called visual crowding. But how does nystagmus cause this?
Now Vijay, Taylor, nystagmus researcher at London’s Moorfields Eye Hospital and University College London has shown that the eye movements associated with nystagmus are responsible.
Mr Taylor has been undertaking a PhD in visual crowding and idiopathic nystagmus and this month his findings were preliminarily published. He says: “I hope through my findings and investigation of nystagmus eye movements we can develop tools to improve access to education and daily tasks.”
For Vijay having his work published is ‘super exciting’.
The Nystagmus Network helped recruit research participants for the study. Thank you to everyone who took part and well done, Vijay! We’re super excited, too!
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.
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.
Thank 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.
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
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.
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.
