Nystagmus Awareness Day – for sports clubs


Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please … Continue reading Nystagmus Awareness Day – for sports clubs

Nystagmus Awareness Day – for snow men!


Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or … Continue reading Nystagmus Awareness Day – for snow men!

Do you know your ECLO?


If you or someone in your family has nystagmus, then make sure you meet your ECLO (Eye Clinic Liaison Officer). You can ask for them the next time you visit the clinic, or find their details on your local authority’s ‘local offer’ page, under visual impairment or sensory services. Alternatively you can search the RNIB’s … Continue reading Do you know your ECLO?

Monday Focus on Facebook


Every Monday over on our Facebook page we focus on a particular nystagmus-related topic to get the week started with a great conversation. Topics we have covered so far have included null point surgery, driving and nystagmus, talking to you child about nystagmus and whether or not to have cataracts removed when you have nystagmus. Anyone … Continue reading Monday Focus on Facebook

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 … Continue reading Nystagmus Network launches new publication on nystagmus and driving

My bouncing eyes baby!


Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am … Continue reading My bouncing eyes baby!

An inspiring story about passing exams!


We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom. Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from … Continue reading An inspiring story about passing exams!

Discovering your baby has nystagmus


My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life. I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is … Continue reading Discovering your baby has nystagmus

Peterborough Community Radio interview


This week the video blog at the Nystagmus Network features our very own Sue! The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.