Making the most of education – Rory Cobb


The Nystagmus Network was delighted to have Rory Cobb with us at Open Day 2017 to lead off the parents’ conference with an informative and inspiring presentation. Rory has a life time’s experience of working in the field of education and supporting children with low vision. Rory was ably assisted by his RNIB colleague, Sue … Continue reading Making the most of education – Rory Cobb

World Film Première – Through my Lenses


The Nystagmus Network was proud to be granted permission to hold the first public screening anywhere in the world of a brand new short film about nystagmus at our 2017 Open Day in Birmingham on 30 September. Almost 200 members of the nystagmus community were present to watch the film. The film’s creator is a … Continue reading World Film Première – Through my Lenses

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!

Want to become a trustee at the Nystagmus Network?


As we all go into 2017, are you looking for a new opportunity to give your energy, time, skills and talent to support the Nystagmus Network? We need people to join our team of volunteer Trustee to guide and direct the Nystagmus Network. Trustees have particular legal responsibilities under charity law. The skills, talent and … Continue reading Want to become a trustee at the Nystagmus Network?

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!

Merry Christmas everyone!


Merry Christmas everyone! It’s been a very busy year at the Nystagmus Network with lots taking place! Our Chairman Richard has a short Christmas message he would like to share with you all – please click on the image below or the link here to watch it. Thank you for our support in 2016! Finally, … Continue reading Merry Christmas everyone!

Steve McKay announcement


It is with great sadness that we announce the sudden and unexpected death of Trustee Steve McKay from Newton Abbot in Devon.  Steve suffered a tragic road accident on Thursday 1 December which rendered him unconscious and he never recovered, passing away on Sunday 4 December.  Steve has been a highly-valued Trustee with the Nystagmus … Continue reading Steve McKay announcement

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