Nystagmus in lockdown


In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person. I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told. Basically, I’m extremely short sighted and on a good day (with … Continue reading Nystagmus in lockdown

The impact of COVID-19 on visually impaired children


A guest post from Rosaleen Dempsey, RNIB Hi there I am from the children’s services in RNIB. Wonder if you would mind sharing a survey for families about the impact of the COVID-19 crisis on the education and development of children with VI. Survey has been designed by partners in the sight loss sector and … Continue reading The impact of COVID-19 on visually impaired children

Let’s go for an eye test!


Our next webinar is all about going to a high street optician’s when you have nystagmus. Tuesday 12 May at 3pm You have had an eye test … what now ?  An interactive webinar for the nystagmus community. Jayshree Vasani (Dispensing Optician) and Sarah Arnold (Optometrist) want to dispel the myths around what happens after … Continue reading Let’s go for an eye test!

How amazing are you?


In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories. Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard … Continue reading How amazing are you?

Your food shopping experience


How are you getting on with shopping for food? What are your experiences of queues, social distancing, assistance available in store? Have you managed to secure online delivery slots? The Nystagmus Network continues to lobby alongside other bigger VI charities (please see this recent Daily Telegraph article) for the rights of people with nystagmus and … Continue reading Your food shopping experience

Does nystagmus or ocular albinism affect my immunity?


Lots of you are asking us this question and some of you have received notification letters from the government. We asked for expert clinical advice and received the following statement: “IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity. “There are some syndromic forms of albinism that are associated … Continue reading Does nystagmus or ocular albinism affect my immunity?

A round up of online learning


The Nystagmus Network has put together a handy list of tried and tested online learning resources for parents and carers. It’s a list that’s growing day by day. If you’d like to recommend a resource, please contact us and we’ll be happy to add it to our list. A brilliant ‘how to’ guide for parents … Continue reading A round up of online learning

Parents of adolescents with nystagmus: research participation opportunity


Ifigeneia Manitsa BEd, MSc, AFHEA (pictured) is a Psychology Researcher at Kingston University London. Her research is about the social and academic inclusion of adolescents with and without visual impairments.  Ifigeneia has a Degree in Primary Education and a Masters in Special Education. Visual impairment has been her field of expertise for the past 7 years. Her latest … Continue reading Parents of adolescents with nystagmus: research participation opportunity

Julia’s musical adventures


A guest post. A couple of years ago, I wrote a piece about being a parent with nystagmus of a child without. That child is now old enough to tell me if an approaching bus is a three-and-a-four-and-a-one or a two-and-a-nine, and I consider myself to be winning at life. My second child appears to … Continue reading Julia’s musical adventures

Our new Facebook groups


The Nystagmus Network has launched 3 brand new official Facebook groups this week to help members of the nystagmus community come together to share their experiences, their problems and their successes and offer each other help and encouragement when it’s needed. All three groups have Nystagmus Network staff members Sue, Sara and Debbie as admins … Continue reading Our new Facebook groups