Category: Information and Support

Raising nystagmus awareness in 2019

The Nystagmus Network works tirelessly to raise awareness of nystagmus, not only on Nystagmus Awareness Day but throughout the year.

Why raise awareness?

We firmly believe that the more people who know about nystagmus and understand its effects, the better life will be for the adults and children affected by the condition.

New for 2019

We’ve revised and updated two free to download PowerPoint presentations.

Introducing Nystagmus or Wobbly Eyes

This presentation is aimed at children in school or pre-school and explains how congenital nystagmus affects young children. Click the link to download Introducing Nystagmus or Wobbly Eyes

Introducing Nystagmus

This presentation is designed to be shown on a screen in reception at a workplace, in clinic or in a hospital waiting room and explains both congenital and acquired nystagmus and how these 2 conditions affect children and adults. Click the link to download Introducing Nystagmus

Considering the RNC?

If you’d like to find out what the Royal National College for the blind has to offer for visually impaired young people, why not go along to a forthcoming ‘have a go’ weekend?

Free for young people aged 13 to 17 with a visual impairment

Saturday 16 and Sunday 17 February 2019

·         Try sports such as Goalball and VI football

·         Art, music and drama

·         Bowling, golf and lots more

The weekend at RNC is free for young people aged 13 to 17 with a visual impairment to attend. Free accommodation is also provided for an accompanying parent/guardian, and siblings are welcome too!

Please visit the RNC website for more information 

Manchester nystagmus network

The next meeting of our new North West regional group will take place on Saturday 26 January in Manchester. Nystagmus Network trustee, Marie Turnbull will once again be your host and this time she will be joined by our volunteer Education Advocate, Frances Lilley.

We look forward to welcoming back the families and adults who came along to the first meeting in November.

New members are very welcome. For details, please contact us today.

Wobbly Eyes in German

The Nystagmus Network UK sends huge congratulations to Hanna and her fellow trustees for the successful launch, at the end of 2018, of the German Nystagmus Netzwerk.

Our two organisations are working closely together to ensure that information and support is available for German speakers everywhere, affected by nystagmus.

To this end, today we celebrate the publication of ”Wackelige Augen”, the German translation of our very own booklet for children, Wobbly Eyes.

Hanna came along to our Open Day in September 2018. You can read her report, here.

To contact the German Nystagmus Netzwerk, email them here or find them on Facebook.

Nystagmus, the way we see it

If you’ve ever wondered how a person with nystagmus sees or how the condition affects their sight, listen to Richard, Harriet and Will explain in our video.

You can show our video to anyone or use it, completely free of charge, for training purposes. All we ask is that you let us know.

Nystagmus, the way we see it – watch here.

Information for Parents

The Nystagmus Network provides much needed information for parents of newly diagnosed children and babies . We understand that this is a very difficult time and that there is sometimes not very much information available. 

Our free to download Parents Booklet provides a clear introduction to the condition and gives parents an idea of what to expect and how to support their child.

Support for adults with nystagmus

Whether you’ve had nystagmus all your life or have acquired it more recently, the Nystagmus Network is here to support adults with the condition, with information, research updates, news, meetings, membership and more.

Or why not get involved with one of our fundraising activities?