Can I tell you about nystagmus?


Can I tell you about Nystagmus? is a guide for friends, family and professionals by Nadine Neckles (illustrated By Vikas Upadhyay). Sue from the Nystagmus Network talks about Nadine’s book here. In this friendly guide, a girl called Amber explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need … Continue reading Can I tell you about nystagmus?

What seems to be the trouble?


What happens when your health problem just doesn’t seem to tick the boxes? In her new book, What seems to be the trouble? writer, researcher and practising body psychotherapist, Claire Entwistle describes her one woman quest for a treatment – any treatment – that would help her neurological condition and her nystagmus. Some people have … Continue reading What seems to be the trouble?

Night in with the Nystagmus Network


Virtual Open Day 2020, on Saturday 3 October, will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests.  This is a fabulous opportunity to meet, chat and network with nystagmus experts, guest speakers and presenters, supporters and members of the Nystagmus Network whilst enjoying a relaxed … Continue reading Night in with the Nystagmus Network

Booking now for Open Day 2020


The Nystagmus Network has a huge variety of presentations lined up for you at virtual Open Day 2020 on Saturday 3 October. Enjoy inspirational presentations, research updates and find all the support and information you need, all from the comfort of wherever you are. Everyone welcome! Due to social distancing rules still in place, we … Continue reading Booking now for Open Day 2020

Want to run a virtual marathon for the Nystagmus Network? You can! Here’s how.


It’s still possible to run a marathon this year. You’ve been keeping fit during lockdown. Your training continued on your daily time outside. All the big runs are cancelled, but … you can still run – on a virtual track with Strava. Your run, how, where and when you want it – you can even … Continue reading Want to run a virtual marathon for the Nystagmus Network? You can! Here’s how.

Joanne sings for the Rising Phoenix


The voice of Nystagmus Network member, acclaimed soprano and Open Day 2020 keynote speaker, Joanne Roughton-Arnold features in the inspirational documentary, Rising Phoenix, a Netflix production charting the history of the Paralympic Games through the personal stories of some of the sports stars themselves.  Described by Daniel Pemberton, the film’s musical director as “an incredibly … Continue reading Joanne sings for the Rising Phoenix

Keeping you connected


The Nystagmus Network is working hard to bring you closer together with other people living with nystagmus or with parents and carers of children and young people who have the condition. We are now running online support groups for adults with congenital or acquired nystagmus and for parents and carers. You can join zoom chats … Continue reading Keeping you connected

Night in with the Nystagmus Network


The Nystagmus Network virtual Open Day takes place on 3 October, with presentations, workshops, forums and fun for everyone. The day, full of support and information and everything nystagmus, draws to a close in the evening with the spectacular Night in with the Nystagmus Network, a virtual supper party with an amazing guest speaker. Night … Continue reading Night in with the Nystagmus Network

Training eye care professionals


High street optical staff need to understand the complexities of nystagmus, how to test the sight and how to dispense any corrective glasses or contact lenses. Due to the cancellation of so many routine eye clinic appointments during the current pandemic and the signing off of non-urgent cases, such as patients diagnosed with nystagmus, local … Continue reading Training eye care professionals

Please give me space


Now that lockdown measures are easing, lots of people, including those who are shielding for health reasons, are keen to ensure that social distancing guidelines continue to be followed. Some blind and partially sighted people are concerned about difficulties with maintaining social distancing and are sometimes even resorting to not going out. If you have … Continue reading Please give me space