Category: News

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

Front cover of the book 'Can I tell you about nystagmus?'.

Can I tell you about nystagmus?

The Nystagmus Network is delighted to share news of the launch today of a brand new book about nystagmus.

Written by Nadine Neckles, the book looks at nystagmus from a child’s point of view and provides insights for parents and professionals alike.

Nadine is a friend of the Nystagmus Network and previously contributed an article about her daughter’s nystagmus for our fortnightly newsletter, Focus, in June 2017. Read her article in full by clicking here.

Since then she has continued to parent her daughter, who also has Chromosome 18q-, whilst writing her blog, Caring in the Chaos.

Meet Nadine at Open Day

Nadine will be joining us at Open Day 2019 on Saturday 28 September. Delegates will have an opportunity to meet her and chat with her about bringing up a child with nystagmus and purchase a copy of the book, signed by the author.

Nystagmus Network endorsement

The Nystagmus Network’s Sue Ricketts has provided an endorsement for the book:

“Can I tell you about Nystagmus … highlights a much misunderstood condition. Seen from the family’s perspective, the description of the way nystagmus affects the daily life of a young child will be informative and reassuring for other parents.”

Order your copy today

The book is available to order directly from the publishers. Please click here for details.

Special offer for members

Members of the Nystagmus Network can purchase the book at a generous 25% discount. Please use the voucher code in your special member email.

Free copies giveaway

The first THREE new members to sign up today will receive a copy of the new book ABSOLUTELY FREE as part of their membership package.

Sign up for membership here.

Wobbly Eyes in German

The Nystagmus Network UK sends huge congratulations to Hanna and her fellow trustees for the successful launch, at the end of 2018, of the German Nystagmus Netzwerk.

Our two organisations are working closely together to ensure that information and support is available for German speakers everywhere, affected by nystagmus.

To this end, today we celebrate the publication of ”Wackelige Augen”, the German translation of our very own booklet for children, Wobbly Eyes.

Hanna came along to our Open Day in September 2018. You can read her report, here.

To contact the German Nystagmus Netzwerk, email them here or find them on Facebook.

Nystagmus Network members hold up their voting cards.

Have you got our new number?

The registered charity number for the Nystagmus Network has changed. Our new number is 1180450. This marks our successful transition from humble charity to a Charitable Incorporated Organisation, as voted for by our members at our AGM in September. Only our number has changed. We remain a membership organisation serving the needs of the nystagmus community, providing support and information, raising awareness and funding research.

Contact details:

Email: [email protected]

Web: www.nystagmusnetwork.org

Facebook: NystagmusNetwork

Twitter: @NystagmusUK

Nystagmus question on Fifteen to One

If you happened to be watching popular Channel 4 TV quiz show, Fifteen to One on Wednesday 19th December and were paying very close attention you will have heard a question about nystagmus.

Quiz master, Sandi Toksvig asked “Which sensory organs are affected by the medical condition nystagmus?”

The contestant clearly knew his stuff as he replied immediately “the eyes”. He earned himself a point and gained a name check for nystagmus on national TV.

Brilliant for nystagmus awareness! Thank you Channel 4.

Watch the episode here.

Dan Williams crouches beside his guide dog, Zodiac.

Seeing Beyond the Eyes

The Nystagmus Network is pleased and proud to have played a tiny part in the Seeing Beyond the Eyes project, headed by Dan Williams at Visualise Training. Thanks to Dan, opticians throughout England and Wales now have a handy resource pack and ongoing training programmes to help them signpost patients for condition specific support, including nystagmus.
Listen to Dan talk about the project here. 
Download your own copy of the pack here.

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.