Weekly digest 22 October  2021

Social media posts, events and highlights of the past 7 days

Over on Twitter this week we looked ahead to the German Nystagmus Netzwerk Open Day. Meanwhile, on Facebook ...

Monday Focus - the effects of nystagmus on sight
Nystagmus has an impact on so many different aspects of sight. These include:
visual acuity - which line you can read on a chart
depth perception - seeing the world in three dimensions
peripheral vision - your field of vision may be reduced
visual crowding - picking someone or something out in a crowd
facial recognition - even familiar people may not be recognised
time to see - visual processing and focus may take longer
variability of vision - depending on the time of day or how you're feeling
Please see our website or contact us for more information.

Tuesday Networking Forums
Don't miss our Zoom get togethers this week
Tuesday 8pm - parents
Wednesday 5pm - adults with acquired nystagmus
Thursday 7pm - adults with congenital nystagmus
If you come along regularly you will already have received your Zoom invitation.
New members welcome. Please email us at for the link.

Wednesday Awareness - What's your nystagmus like?
Nystagmus is different for everybody - what do you think of this description?
My eyes sometimes move without me wanting them to.
Sometimes I find it difficult to see things.
I can only see about 3 metres clearly.
It hurts my eyes if I have to look at long distances.
George - aged 11

Thursday Research - How well will he be able to see?
This is one of a nystagmus parent's most frequently asked questions.
The answer is now available thanks to research carried out at the University of Leicester by Dr Mervyn Thomas among others, partly funded by the Nystagmus Network.
Using data collected from OCTs the team has developed a grading system based on the degree of foveal development so that they can predict with some accuracy the visual acuity an infant will eventually achieve.
That means that a quick examination of the back of the eye can predict with some certainty which line of the test chart the child will eventually be able to read.
We hope this will provide parents with some reassurance.

What do we see?
In answer to the question ‘What does a visually impaired child see?’ the Thomas Pocklington Trust has produced a new video simulating the 5 most commonly seen forms of vision impairment in children and young people, including nystagmus. The film, What do we see? 2, shows what it’s like to have nystagmus, retinitis pigmentosa, infantile or juvenile cataracts, retinopathy of prematurity and optic atrophy. Footage was recorded in a school setting.
Members of the Nystagmus Network forum for adults living with congenital nystagmus viewed the first draft of the nystagmus simulation and helped shape the final version. We are very grateful for their feedback.
TPT said: “Thank you so much for all your support and guidance throughout the making of this. We couldn’t have done it without you.”
Watch the video on YouTube.

You can be a Friday Fundraiser - any day of the week!
Whether you want to run, walk, jump out of a hot air balloon, get rid of some old books, games and DVDs, bake a cake or stay silent for 48 hours - you can - and raise money for the Nystagmus Network at the same time. Go to the fundraising page of our website for more ideas or email us at
Or for even more inspiration you can download our A-Z of fundraising ideas form our website.

This Saturday ,,Nystagmus im Dialog", the first virtual event for German speakers is hosted by our friends at the German Nystagmus Netzwerk. We've sent them a special video message and we'll be joinnig them online, too. We wish them every success.


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