Month: September 2018

Research funding will use iPads to identify the best method to manage nystagmus

Fight for Sight and The Nystagmus Network have announced funding for three exciting nystagmus research projects at the Nystagmus Network Conference, which is taking place today during National Eye Health Week 2018.

In total £30,000 in funding will be used for projects bringing benefits to children and adults living with the condition, which is characterised by involuntary and repetitive movements of the eye.

James Self at University of Southampton will be developing a new clinical test using an iPad app to measure a patient’s ability to identify faces in a crowd, one of the challenges of nystagmus. The aim is for the app accurately and effectively to diagnose patients and ensure they are offered the most appropriate support for their nystagmus.

Dr Matt Dunn from Cardiff University is being funded to research an improved diagnostic technique for nystagmus in children. Until now the challenge for patients has been keeping their eyes still while the test is performed. Dr Dunn will investigate a new technique that can be used while the eye is also moving, which could improve the earlier diagnosis of this condition in future.

Dr Mervyn Thomas from University of Leicester has been funded to investigate how nystagmus affects the clarity of vision of children living with the condition. The results from this study could directly impact the care and management of very young children with nystagmus.

Dr Neil Ebenezer, Director of Research, Policy and Innovation at Fight for Sight, said: “We are delighted to continue our long-lasting partnership with Nystagmus Network. Nystagmus is a condition which affects an estimated 1 in every 500 children in the UK, so we hope that funding these three research projects will directly benefit patients living with nystagmus.”

Vivien Jones, President and Founder of the Nystagmus Network and Chair of the Nystagmus Network Research Sub-committee, said: “We are absolutely delighted to be making these awards to research centres in the UK.  We hope the three research projects we are funding together with Fight for Sight will make progress in terms of improving diagnosis and prognosis, predicting future vision in infants and young children with nystagmus and developing a vision test that can be used in clinical trials of various therapies. All these projects fit our test of improving quality of life and we are very pleased to be able to support them.”

The Nystagmus Network nystagmus research conference is taking place today.

UK Nystagmus Research Meeting 2018

Researchers and clinicians from Cardiff, London, Plymouth, Sheffield and Southampton are meeting today to plan the way ahead for nystagmus research. Our medical experts are joined by charity trustees and our funding partners, Fight for Sight.

The half day conference, hosted by the Nystagmus Network, takes place in Birmingham today ahead of the charity’s Open Day 2018 on Saturday.

Vanessa and Richard complete their abseil

Vanessa and Richard were away on holiday when they heard that the Nystagmus Network were looking for people to abseil down the UK’s tallest piece of public art to raise money for nystagmus research at Moorfields and UCL.

They signed up straight away.

The big day came, but the weather was certainly not what they’d been used to on vacation.

Thank you to both of you for putting up with all that ghastly rain. We hope you managed to enjoy the view from the platform at least.

Richard did all his fundraising offline, but you can still sponsor Vanessa here.

A research focus for Open Day

This year’s Open Day has a huge emphasis on nystagmus research. Throughout the day delegates will be able to visit our Research Hub and speak with researchers and clinicians from Moorfields, London, the School of Optometry and Vision Sciences at Cardiff University, the School of Ophthalmology and Orthoptics at the University of Sheffield and the Southampton Eye Unit, Southampton General Hospital and the University of Southampton. Each team will also be presenting their latest work in the main auditorium and taking questions.
In addition, we will have with us, among others, representatives from the Royal Eye Infirmary, Plymouth, Queen’s Medical Centre, Nottingham, the University of Birmingham, Aston University and, of course, our nystagmus research funding partners, Fight for Sight.
There will also be presentations and workshops on education support, mobility and independence, assistive technology, benefits and lots, lots more.
Open Day is also a great opportunity for us to celebrate the successes of our members and supporters. At lunch time there will be a guitar recital by James, who achieved Grade 3 in music at the age of 9 despite struggling to read sheet music.

Are you signed up?

Lots of Nystagmus Network supporters are raising money for the charity by shopping online with @easyuk. Every time you shop online, the retailer gives us a free donation. All these tiny amounts can add up to quite a sum at the end of the month and really make a difference to our finances.

Plus – when you sign up and raise your first £5 in donations, @easyuk will give us a bonus £5 donation.

Please sign up and raise today.

Thank you

Yorkshire 3 Peaks – completed!

Steph and her team completed the Yorkshire 3 Peaks Challenge on Saturday in 11 hours 45 minutes. Well done, team!

They were doing this in honour of Steph’s young son, Henry, who has nystagmus and they’ve so far raised over £1,000 for the Nystagmus Network!

Thank you from everyone at the charity.

You can still sponsor Steph here.

They did it!

Although the Team Nystagmus Network / Moorfields Eye Charity fundraising abseil at the ArcelorMittal Orbit couldn’t go ahead on Sunday morning as planned due to heavy rain and high winds, Vicki and Tom took advantage of some available slots on Saturday morning and took their leap for nystagmus research then.

Congratulations, Vicki and Tom! You’re amazing!

The rest of the team are just waiting for confirmation of their new date for their abseil which will be some time in October. we’ll keep you posted.

 

Sign up to the Nystagmus Network lottery

Did you know that for just £1 per week you could be in with a chance to win £25,000? You could, if you signed up to the Nystagmus Network lottery.

The even better news is that, once all the prizes are paid for, all profits come directly to the Nystagmus Network as a donation.

If you’d like to find out more and sign up, please click the link.

The abseil is this weekend!

This Sunday morning Claire A, Claire B, Glen, Matt, Richard B, Richard P, Tom, Vanessa, Vicki and Vicky will be scaling down the UK’s tallest piece of public art, the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park to raise money for nystagmus research at Moorfields and University College, London.

Our 10 intrepid Team Nystagmus Network abseilers were set a sponsorship target of £250 each. At the time of writing they’ve already far exceeded that target and look set to be able to make a real impact on funding for nystagmus research over the coming months.

We wish them all well on behalf of the entire nystagmus community.

Good luck, everyone!