A survey on glaucoma and nystagmus

You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today.

“The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus who have also been diagnosed with glaucoma.

“This survey will help us enhance our knowledge on how clinical tests can be improved to detect additional eye conditions in patients who already have nystagmus. The survey should take 5-6 minutes to complete. All answers are anonymised and will be kept confidential.”

Take part in the survey

Nystagmus Network UK research workshop 2019.

UK Nystagmus Research Workshop

The Nystagmus Network is today hosting the UK Nystagmus Research Workshop 2019 at the School of Optometry and Vision Sciences, Cardiff University. Delegates are joining us from the 6 UK centres of nystagmus research excellence. These are:

The School of Optometry and Vision Sciences, Cardiff University
The Ulverscroft Eye Unit, University of Leicester
Moorfields Eye Hospital, London
The Royal Eye Infirmary, Plymouth
The Academic Unit of Ophthalmology and Orthoptics, University of Sheffield
The University of Southampton and Southampton General Hospital

All delegates will also be attending the Nystagmus Network Open Day 2019 at the Principality Stadium, Cardiff on Saturday.

A survey on glaucoma and nystagmus

You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today.

“The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus who have also been diagnosed with glaucoma.

“This survey will help us enhance our knowledge on how clinical tests can be improved to detect additional eye conditions in patients who already have nystagmus. The survey should take 5-6 minutes to complete. All answers are anonymised and will be kept confidential. “

Take part in the survey

In celebration of Irene

Today Nystagmus Network’s Sue and Sara are travelling to Leicester University to attend a day of celebrations. We shall be marking 20 years of ophthalmology in Leicester and, in particular, the work of Professor Irene Gottlob.

The programme for the day, at the Ulverscroft Eye Unit, includes a range of presentations on various eye conditions, including, of course, nystagmus.

Dr Helena Lee, University Hospital Southampton, will speak on her trials using oral Levodopa to rescue retinal morphology and visual function in a murine model of human albinism.

Dr Mervin Thomas, University of Leicester, will present on the development and clinical utility of a diagnostic nystagmus gene panel using targeted next-generation sequencing.

Sohaib Rufai, Clinical Fellow at University of Leicester, will explore whether handheld OCT can predict future vision in infantile nystagmus.

Leah Haywood, University of Leicester, will discuss facial recognition in infantile nystagmus.

Dr Frank Proudlock, University of Leicester, will talk on reading in infantile nystagmus.

The nystagmus research HUB is back!

Launched at Open Day 2018, the nystagmus research HUB will back back at Open Day 2019, giving delegates the opportunity to chat one to one with the UK’s leading nystagmus researchers and clinicians, try out equipment, volunteer for research trials and ask anything they want.

The HUB will be open throughout the event, so don’t forget to visit!

Can’t make it to Cardiff? No problem. Please send us your questions and we’ll pass them on.

Call for applications

The call for the joint Nystagmus Network / Fight for Sight £250k award to undertake a three year nystagmus research project, is now open.

Vivien Jones, chair of the Nystagmus Network’s research committee, said: “We are delighted to be joining Fight for Sight in funding a post-doctoral researcher for nystagmus. This means we will be bringing new expertise into the field, which we are very pleased to do. It is the biggest investment we have made in research and we are grateful to all those who fundraise for us for helping to make this happen.”

This investment comes as a direct response to an appeal by the nystagmus research and clinical experts attending the UK nystagmus research workshop 2018, hosted by the Nystagmus Network.

The deadline for abstract applications is 11 July 2019. 

Apply here.

Our fabulous Baker boy!

Steve Baker, who’s Twitter handle is, appropriately, @fabbakerboy, will be running the London marathon this Sunday for nystagmus research at Moorfields.

Not content with just one marathon, Steve, who has congenital nystagmus himself, is also taking on this year the QE Marathon in March and the North Downs Way 50 mile ultramarathon in May.

Steve is fundraising for Moorfields Eye Charity and every pound he raises will go into a specially dedicated ‘nystagmus research’ pot .

Steve says: “Moorfields Eye Hospital is an internationally renowned centre of excellence when it comes to pioneering eye treatment. If you have anything seriously wrong with your eyes Moorfields is the place to go.

“I started going there some 38 years ago when I was just two years old and continued to go every year until I was 16. I have a condition called nystagmus, which is when the eyes shake. This is a rare condition and most people who suffer from it are registered blind.

“However, I was fortunate enough to be able to see OK with the use of glasses. These glasses would be prescribed every year at the end of my annual visit to Moorfields, which would involve hours of testing on my eyes.

“Throughout this time my eyes slowly improved, but not enough for me to comfortably pass a sight test for driving.

“Then in 2001, after I’d finished education, I had the opportunity of undergoing a pioneering operation at Moorfields to correct the squint in my eyes and reduce the nystagmus. Following the operation my eyes went from a 17 degree squint to just 1 degree. A 1 degree squint is negligible and barely noticeable. The effect on my eyesight was life changing – I could now see more than well enough to drive and wear contacts if I so chose. Having the chance of being able to drive gave me the confidence to become a journalist, where driving is almost a prerequisite, and set me on the road for being the writer I am today.

“My eyes continue to improve year on year. I owe a huge debt of gratitude to Moorfields and would love to help them save the sight and change the lives of many more people.”

A highly commendable ambition, Steve. Thank you!

You can sponsor Steve, here.

Matt Dunn headshot

Nystagmus Network funding leads to discovery of new algorithm

A paper relating to a research project by members of the Cardiff University team and others, which the Nystagmus Network funded, has been formally published this week.

The report describes an algorithm which takes an eye-tracking recording and automatically separates it into its component parts (quick phases, slow phases and foveations*), allowing several measures related to the nystagmus to be calculated automatically (including frequency, amplitude, intensity and foveation period metrics). Automatic segmentation of the waveform also provides the basis for calibration of the eye-tracker (previously this could only be done by an experienced eye movement analyst).

Matt Dunn from Cardiff says: “We hope that this algorithm will provide the basis for more accurate monitoring of nystagmus in clinics. Being able to calibrate will (also) allow people with nystagmus to use personal eye-tracking systems such as those that allow people with physical disabilities to control their computer.”

Read the full manuscript, here.

*foveation means angling the eyes to focus on an object

Fundraising? It’s a Colson family affair

The Colson family are serious about fundraising for nystagmus research. Sisters Laura and Ellie are taking part in the Peak District Ultra Challenge this summer, their first ever ultra marathon, whilst their brother, Ryan, CEO of the family firm, Colson Skips, is getting his entire workforce right behind them.

If you’d like to sponsor Laura and Ellie, you’ll find their Justgiving page here.

You can read Ryan’s story online, here.