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.

Mousetrap VI Theatre Trip

If you would like to take part in a family event especially for children and young people who have a visual impairment, Nystagmus Network is offering you the opportunity to join a special London theatre experience for families.

The Little Match Girl and other happier tales

For adults and brave children alike, expect music, puppetry, dark magic… and perhaps some modern truths that we would all rather remain hidden.
  • Sam Wanamaker Playhouse, 21 New Globe Walk, Bankside, London SE1 9DT
  • Sat 7 April, 10.00am to 3.40pm
  • £10 for young people (18 and Under), £12.50 per adult
  • Age 9+
These tickets are offered to family groups where one or more of the children in the family have a visual impairment, and their sighted siblings. Maximum of 6 tickets per family.

 

For full details and how to book, please click the link to Mousetrap Theatre Projects.

 

Fancy doing a sky dive for Nystagmus Network?

Last year the charity held its first ever fundraising skydive. Luke Sargent jumped out of a plane while his young son watched proudly. Imagine that!

Now we’ve signed up with UK Skydiving Adventures so anyone can have a go. Simply follow the link to the website and get yourself signed up.

It’s just one brave leap from a plane, but it could be a huge step forward for nystagmus research!

Thank you John and Crane Valley GC

Thanks to John Gray and his Dorset golf club for their generosity, the Nystagmus Network will be able to continue to invest in research. John had no hesitation in nominating the Nystagmus Network as his captain’s charity of the year when he took up the reins as captain of Crane Valley Golf Club in 2017.

His choice was in honour of his young grandson, Caleb, also known by everyone as CJ. CJ was born with nystagmus. John’s goal was to raise awareness of the condition throughout the membership and beyond and also to raise funds for the charity.

John achieved both of these things, even meeting another family with a child who has nystagmus along the way.

CJ was there to help Grandpa with all the big club occasions, too. The highlight of the year was a fun day with a Pirates of the Caribbean theme and disco in the evening, with CJ as the guest of honour.

John’s year as captain ended this month with the AGM and presentation evening. Nystagmus Network trustee, Peter Greenwood, himself a keen golfer, went along to receive a cheque for £5,114.50

Thank you to everyone who contributed: Crane Valley GC members, friends and family, to CJ for helping and, especially, to John.

Broadway swimming club joins #nystagmusbigswim

We’re celebrating today the huge achievements of Lucie Wood and her family in support of Wobbly Wednesday 2017 (national and international Nystagmus Awareness Day) and the #nystagmusbigswim.
Lucie’s daughter has nystagmus. She, her sister and their 2 cousins decided to take part in the #nystagmusbigswim. When they asked their swimming club, Broadway ASC in Oldham, if they could ‘borrow’ a lane, the committee decided to get the whole club involved. Thanks to Lucie and her family the club raised £500 for nystagmus research and all those families now know about nystagmus.
The picture shows Lucie’s Mum, Pat, receiving the cheque, on behalf of the Nystagmus Network, from Danny Wood, committee member at Broadway ASC .
HUGE THANKS to Lucie, her family and Broadway ASC.

Want to run the London Vitality 10k for the Nystagmus Network?

If you’re looking for a challenge and would like to help this charity raise funds, why not sign up for one of our free places in the London Vitality 10k on 28 May?
All we ask is that you set up a Justgiving page for your sponsors, agree to raise at least £100 for the charity and wear your free Nystagmus Network running vest to help us raise awareness.

Interested?

Please contact us 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 launches new publication on nystagmus and driving

Whether or not people with nystagmus can drive is probably the most frequently asked question the charity receives. Because nystagmus is such a complex condition and affects everyone differently, there is no definitive answer. In our new publication, Nystagmus and Driving, we address all the issues, answer your questions and signpost to free and concessionary alternatives.