Vikki’s family have been members and supporters of the Nystagmus Network for many years. Parents, Peter and Lynne, even organised an entire Open Day one year.
Every penny the couple raise will go directly into nystagmus research at Moorfields Eye Hospital and University College, London.
Tickets for the Nystagmus Network Open Day 2018 go on general sale at midday today. With a packed line up of speakers and presenters, including Marsha De Cordova MP, Shadow Minister for Disabilities and David Katz, internationally acclaimed ‘blind’ photographer, alongside presentations from the UK’s top nystagmus research teams and workshops on education support, benefits, technology and mobility, you won’t want to miss out on the biggest nystagmus event of the year.
The Nystagmus Network is funding equipment and testing to underpin nystagmus research taking place at Cardiff University School of Optometry and Vision Sciences, in collaboration with the genetics research team at the University of Southampton.
On behalf of the Cardiff team, Nikita Thomas reports:
“Our study attempts to investigate how visual function in Idiopathic Nystagmus is related to the formation of the retina. This will improve knowledge regarding how IN is initially established and the developmental components that eventually contribute to poor visual acuity.
A better understanding of how IN develops may in turn help us interpret its main underlying cause and the likely benefits of treatment in infancy, including the timing and method(s) of potential intervention.”
Researchers are developing techniques to measure more accurately the visual acuity and peripheral vision of a person with nystagmus, taking into account eye movements and any null point. It is thought that, not only will this work revolutionise the way that sight and vision loss are measured in nystagmus patients, but it will also bring greater insight into the development of sight and the onset of nystagmus itself.
Could you take the plunge and abseil 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, with a breathtaking 20 mile vista across London, including iconic buildings such as the Gherkin, St Paul’s Cathedral, Canary Wharf and Wembley Stadium, as well as the world famous sporting venues at Queen Elizabeth Olympic Park.
It surely is a once in a lifetime challenge!
The Nystagmus Network is partnering with Moorfields Eye Charity to raise money for nystagmus research at Moorfields Eye Hospital, where Mr Vijay Talyor is currently investigating congenital nystagmus and visual crowding, and its research the partner, the University College London (UCL) Institute of Ophthalmology where Dr Parashkev Nachev is pioneering the use of magnetic implants to control the rapid eye movements associated with acquired nystagmus.
Your fundraising abseil will directly support these and other nystagmus research projects.
Time and date: 8am – 1pm, Sunday 23 September 2018
Registration fee: £50
Sponsorship target: £250
Address: ArcelorMittal, Queen Elizabeth Olympic Park, London E15 2NH
Experience: No experience necessary, all training given on the day
Participants will also receive:
· A fundraising pack full of tips and advice
· Ongoing support from our expert fundraisers
· A Moorfields t-shirt if you raise over £350
· A free photo if you raise over £500
If you think you could take the leap for nystagmus research, please complete the form below.
Sue attended a meeting yesterday at the House of Commons of the All Party Parliamentary Group for Eye Health and Visual Impairment. The subject of the meeting was eye research. Sue was the guest of Fight for Sight, whose Chief Executive, Michele Acton, gave a powerful account of the current sight research position and admirably represented the voice of both patient groups and research teams. The meeting was chaired by Lord Low of Dalston, who is himself visually impaired. Other speakers were Red Szell, who spoke evocatively of his own experience of gradual sight loss due to retinitis pigmentosa; Dr Ian Churcher, Vice President of Drug Discovery at Benevolent AI, who explained the use of artificial intelligence to push the boundaries of treatments for different eye conditions; Rachael Pearson, Professor of Developmental Neuroscience at University College, London who gave an overview of eye research and, in particular, the importance of basic research and Dr Elizabeth Robertson, Director of Research Diabetes UK, who outlined how charities are collaborating to solve large scale clinical issues.
Although there is no doubt still a way to go to achieve the government investment needed to challenge preventable sight loss, Sue was encouraged by what was said at the meeting.
She commented:
“When my daughter was diagnosed with nystagmus in 1991 an ophthalmologist told me then that there was no money in nystagmus research, and nobody wanting to do it, because it simply wasn’t exciting enough. How proud I am to be able to work with the Nystagmus Network, in partnership with Fight for Sight, to continue to turn that around.”
Every Thursday on our Facebook page we publish the latest news on nystagmus research or publish details of new nystagmus trials that you can take part in.
We are currently supporting these trials:
The Southampton University Hospital team need to find people with albinism and nystagmus, aged over 60 so that Mr Jay Self and his colleagues can discover why people with albinism seem to be immune from AMD (Age-related Macular Degeneration).
The Cardiff University team are looking for children with congenital nystagmus aged from 6 months to 10 years, with our without Downs Syndrome, so that they can find out more about how vision develops in young children.
The Moorfields/UCL team, under Mr Vijay Taylor, are recruiting adults with congenital ideopathic nystagmus, between the ages of 18 and 50, to investigate the phenomenon known as ‘visual crowding’ associated with nystagmus.
Don’t miss your chance to take part in research and read the latest nystagmus-related news!
A pilot randomised study, led by Maria Theodorou FRCOphth, PhD at Moorfields Eye Hospital, London, funded by the Nystagmus Network/Fight for Sight, Moorfields Eye Hospital Special Trustees and the National Institute for Health Research (NIHR), has shown that wearing soft contact lenses may help people with CIN see a little better.
The purpose of the study was to see whether soft contact lenses could improve vision more than glasses and whether soft lenses were as effective as rigid ones.
38 adult volunteers with CIN wore soft contact lenses (randomly with and without corrective prescription) for 2 weeks. Observations were made around the ease and safety of wear as well as any effect on visual acuity and nystagmus waveform.
27 people successfully completed the trial, a small number having found soft contact lenses difficult to get in and out of the eye or uncomfortable to wear. On the whole, the lenses were tolerated well and a trend was identified towards an improvement in visual function after the 2 weeks.
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.
Albinism researchers in Southampton (Jay Self and Helena Lee) would love to hear from anyone with any form of albinism who is over the age of 60. If you or anyone you know fits the bill, please read on …
Jay and Helena are seeking to understand two questions which have baffled researchers for some time and they need your help:
1. Why has Albinism and Age Related Macular Degeneration (AMD) never been seen in the same patient when AMD affects 1/3 of people over 75? Are people with Albinism protected from this condition?
2. Why does the retina lose function late in older animals with Albinism, but apparently not in humans?
If anyone with Albinism, who is over the age of 60, would like to help Jay and Helena find answers to these questions, please complete the form below. Thank you.
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
Mr Jay SelfBM, FRCOphth, PhD, Associate Professor at Southampton University and Consultant Ophthalmologist at Southampton General Hospital, joined by his colleague, Dr Helena Lee, NIHR Academic Clinical Lecturer in Ophthalmology at the University of Southampton, delivered this presentation.
