research – Page 15 – Nystagmus Network

The Nystagmus Network supports Julian’s Big Blind Walk

Julian Jackson lost his sight in 2010 as the result of an inherited retinal condition. Since then he has become a visual impairment champion. He has worked with a leading eye research organisation and, through his own social enterprise, VisionBridge, campaigned to bring sight loss and the need for more research to public awareness. His work has gained momentum and he is now partnered with researchers, eye health professionals and members of the visually impaired community across the UK.

What is the Big Blind Walk?

Julian is seeking to raise awareness of and funding for sight research, for too long seen as a ‘cinderella’ branch of medicine. He has previously tandem cycled from John O’Groats to Land’s End, but this year he plans to walk back along the entire 1,000 mile route, from the bottom to the top of the UK. He thinks it will take him around 7 weeks.

He will set off from Cornwall on Sunday 29 April, when the BBC1 Countryfile team will be there to film him. If all goes to plan, Julian hopes to arrive in the far north of Scotland by around 22 June.

Why is the Nystagmus Network supporting Julian?

The Nystagmus Network promotes and funds research into nystagmus, but we are only a small charity with limited resources. If we support Julian to raise the profile of vision loss and the need for research, as well as a large pot of money which eye sight researchers can bid for, we can all benefit.

Richard Wilson OBE, Chairman, Nystagmus Network, writes: “The Nystagmus Network is delighted to support Julian and his Big Blind Walk, because we believe wholeheartedly in his mission to raise awareness of sight health and foster innovative research.”

How can I take part?

In support of Julian’s endeavour, the Nystagmus Network is asking members of the nystagmus community simply to get out there and cheer Julian on. If you live close to Julian’s route, you can follow his interactive map to find out when he’s passing by. Why not walk a section with him? He would be very glad of the company.

If you’re planning to walk with Julian, please let us know and we will send you a Nystagmus Network T-shirt to wear. It will make it easier for you to meet other people affected by nystagmus in your area, help Julian publicise his walk and raise awareness of nystagmus, too.

A thank you from Julian

“I’m so grateful to the Nystagmus Network for not only supporting my Big Blind Walk to improve awareness and understanding of the social, economic and psychological impact of sight loss amongst a growing number of the UK population, but also in promoting and raising money for eye research, which I believe is one of the most underfunded areas of medical research and certainly one of the best kept secrets in the UK!”

Thank you for your support.

Do you use audio description to watch TV?

Research participation opportunity

If you use audio description services to watch TV, you could help Victoria, from the University of Seville, with her survey of VI friendly TV.

Please read on …

My name is Victoria García-Prieto and I work at the University of Seville (Spain). I am currently conducting research on accessible television for people with disabilities. I have designed a brief online survey to find out what people think of subtitling, audio description and sign language services on the BBC.

To thank you for your participation, at the end of the survey please leave your email address and you will be put into a draw to win two hotel nights for two people. Your answers will remain totally anonymous.

Victoria has promised to share with us her research findings.

Magnets and nystagmus – research news update

Researchers at University College London, Moorfields Eye Hospital, and the University of Oxford are developing magnetic implants to treat nystagmus. Last year, Nystagmus Network assisted Dr Parashkev Nachev, from University College London, in recruiting suitable candidates with the acquired from of nystagmus to take part in the next stage trial, following initial success with a single subject.

Read the full update here.

Nystagmus research news update from Dr Helen Griffiths at Sheffield University

Helen and her team are working on a virtual reality solution for the problematic sympton of oscillopsia in Acquired Nystagmus.

Helen writes:

“Many thanks to you all at Nystagmus Network and to your partners Fight for Sight for your support, allowing us to continue the VR project work. We have started and have been able to develop a method for the camera within the headset to record eye movements and convert this signal into the visual scene presented in VR. We are pleased with this progress so far.

I hope we can be successful in providing a method for some relief for AN.

We hope to have ethics approval for the device trial in the next 2 to 4 weeks and so I’ll be in touch about recruiting suitable trial participants.”

Nystagmus Network will post details of opportunities to take part in this and all other nystagmus research trials here.

Maria Theodorou speaks at a Nystagmus Network event.

Soft contact lenses may improve vision in adults with CIN

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.

New research project on visual crowding in CIN

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.

Thank you.

Nystagmus Network and Fight for Sight fund two new nystagmus research projects

Nystagmus Network and Fight for Sight have partnered to fund research aimed at the early detection of nystagmus and improve the quality of life of those with nystagmus

Fight for Sight, the UK’s leading eye research charity, and Nystagmus Network, the foremost charity in the UK providing support and information about nystagmus, are working in partnership to fund research into a complex condition characterised by repeated involuntary movement of the eyes. Through the partnership, two research projects into nystagmus have been awarded.

Dr Lee Mcilreavy from Cardiff University will use the funding from Fight for Sight and the Nystagmus Network to determine whether a novel eye tracking approach can correctly identify the patterns of eye movement made by those with infantile nystagmus. This study could lead to a simple and child-friendly eye tracking test that does not rely on expensive technology. This has the potential to detect the condition earlier and allow children and families to receive an earlier diagnosis.

Dr Helen Griffiths, at the University of Sheffield, has been awarded funding to develop an image stabilisation technology in virtual reality (VR) to treat a troubling symptom called oscillopsia, where the individual perceives the world in a continuous and erratic motion due to involuntary movements of the eyes. She will work towards stabilising images on the retina in individuals with acquired nystagmus. A VR headset with integrated head tracking will be configured to track the direction of gaze. This data will be used to adjust the VR display in real time so that a stable view is projected onto the retina of the user, independent of eye orientation. For as long as the user wears the headset, the observed image will be stable. This alternative solution will offer relief to those who have this form of nystagmus.

Michele Acton, CEO of Fight for Sight, said: “We are pleased to be working in partnership with Nystagmus Network to fund research into this complex eye condition. Both research projects have the potential to positively impact the lives of those living with nystagmus. Only by funding research will we begin to tackle nystagmus.

”Vivien Jones, President of the Nystagmus Network and Chair of the Nystagmus Network Research Sub-committee, said: “It is a pleasure to join with Fight for Sight in making this award to Cardiff University for their plan to develop a means of diagnosing infantile nystagmus in the community setting. We hope that this award will mean the plan can be brought to fruition with all the benefits this will bring to families in terms of more accessible diagnosis.

We are also delighted to join Fight for Sight to fund a project developed by the University of Sheffield to deal with one of the most distressing symptoms that can go with acquired nystagmus – oscillopsia, where the individual perceives the world in constant motion. Sheffield propose that a way of offering relief from this is through stabilisation of the image on the retina by developing image stabilisation technology in virtual reality (VR). This would be a major breakthrough for those who acquire nystagmus in later life, and who suffer from oscillopsia.”

Research investment by the Nystagmus Network

Thanks to generous donations and income from membership subscriptions, trustees of the Nystagmus Network were able to allocate their full research budget to new and continuing nystagmus studies in 2017. Towards the end of the year an opportunity arose to fund an additional research project, likely to have a huge impact on the quality of life of people living with nystagmus. Trustees therefore decided to extend their financial commitment to research for the current year in order to initiate the project without delay. There will be a national press release to announce the detail of the new study soon.

Trustees have already agreed a further increase to their planned spend on research for 2018 in order to drive additional studies. None of this would be possible without the continuing commitment of our supporters and fundraisers and our long standing partnerships with the leading UK hospital and university teams working in the field of nystagmus.

You can help us continue to fund nystagmus research by fundraising or donating. Thank you.

Nystagmus and disability sports classification

The Nystagmus Network often hears of people struggling with the current classifications for vision impairment in sports. Since many people with nystagmus probably don’t classify with the current test we would like to invite members of the nystagmus community to take part in new research which may bring us all one step closer to inclusion in major competition.If you would like to be involved in research into classification with the IPC, please read on …

Jamie Fuller, founder of the Outspan Rebels VI ski team, has been in touch with the IPC (International Paralympic Committee) team involved in the research to adapt the way classification is done or the parameters measured.
Hikmat Subhi is leading a UK team in Cambridge, whilst another team in Canada is focusing particularly on skiing.

To take part, please contact Hikmat directly. Email at [email protected] or call 01233 698070.

Important note from the classification research team:

“We do classification research, but are independent from classifiers. So it’s important to say that people who take part receive no advantage in future classification, just as those who don’t take part would not be disadvantaged. This project is separate from what is happening for skiing, so it won’t directly change classification in skiing, though hopefully it will improve the way that the visual field is measured during classification for skiing. “

Research participation opportunity – albinism in the over 60s

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.

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