Month: July 2018

Thank you, King Cross Surgery!

The Nystagmus Network is hugely grateful to King Cross Surgery in Halifax for their amazing support on Nystagmus Awareness Day 2018.

Practice Manager, Heather, whose 8 year old son has nystagmus, says:

“The Network was and is an invaluable resource to us as new parents, to understand his condition and how it may affect him as he grows.

At the start of 2018, the Practice’s Patient Participation Group (PPG) agreed a number of charities it would support throughout the year. They agreed that Nystagmus Awareness Day on 20 June would be the first.

Members of the PPG drummed up support from local businesses to donate raffle prizes and we held a bake sale for the Wednesday itself. We had 15 raffle prizes ranging from a £30 Tesco voucher, pamper hamper and produce hamper to jewellery, wine and chocolates. Staff and patients alike bought tickets for the raffle (£1 each) and this was drawn last Friday.

The Bake Sale was very successful. We used the resources sent from the Network to promote awareness of the condition and I spoke to patients about it when they visited the stall. We raised £247!

We put up a small display opposite the reception desk to promote the raffle and the Network. A patient who has nystagmus was so impressed with this he took a picture and said it was the first time he’d seen anything about nystagmus in a health care setting! The need for raised awareness is clearly there.

Other practice managers around Calderdale contributed to the raffle and a couple of them will be holding similar events in their practices to raise more awareness and funds to support the great work the Network does.”

THANK YOU, Heather and everyone involved!

Nystagmus research – a progress report

The Nystagmus Network is funding equipment and testing to underpin nystagmus research taking place at Cardiff University School of Optometry and Vision Sciences, in collaboration with the genetics research team at the University of Southampton.

On behalf of the Cardiff team, Nikita Thomas reports:

“Our study attempts to investigate how visual function in Idiopathic Nystagmus is related to the formation of the retina. This will improve knowledge regarding how IN is initially established and the developmental components that eventually contribute to poor visual acuity.

A better understanding of how IN develops may in turn help us interpret its main underlying cause and the likely benefits of treatment in infancy, including the timing and method(s) of potential intervention.”

Researchers are developing techniques to measure more accurately the visual acuity and peripheral vision of a person with nystagmus, taking into account eye movements and any null point. It is thought that, not only will this work revolutionise the way that sight and vision loss are measured in nystagmus patients, but it will also bring greater insight into the development of sight and the onset of nystagmus itself.