Each week we are going to be saying “Hello” to another organisation in the VI world to learn more about who they are and what they do.
This week, we are chatting to Sue Ricketts (Executive Information and Development Manager) from the Nystagmus Network.
So, Hi Sue, please can you tell us about the Nystagmus Network:
Nystagmus is a visual impairment that is characterised by wobbling or flickering of the eyes from side to side, up and down, or round and round. This affects the ability to focus, judge speed and depth, and recognise faces.
Around 1 in 1000 babies are born with nystagmus (congenital) whilst many other people develop nystagmus later in life (acquired) often because of another health condition such as a stroke, multiple sclerosis, brain tumour, or the effect of a drug or head injury.
The Nystagmus Network is a registered charity that was established in 1984 by Vivien Jones, sat at her kitchen table, who was a concerned mum, seeking peer support – she is still heavily involved today as a trustee and Honorary President.
What are your charitable objectives?
To provide support and information for children and adults living with nystagmus, their families and the professionals working with them. We do this through:
- Phone or email enquiries
- Free to download digital information documents
- Monthly online forums
- Face to face regional and national events
- Social media
We can help families understand how nystagmus may affect a child or an adult’s sight as well as their social and emotional wellbeing.
We also foster and fund research into better diagnostics, prevention and, eventually, cure. We have 6 teams working across the UK, sharing data, and host an annual nystagmus research workshop.
Additionally, we work to raise awareness of the condition as by having a better understanding, more services can be provided. We have an annual Awareness Day. This year it was on June 20th and we ran a ‘Raindrops’ campaign which included story writing workshops for children, a drawing competition and a Welly Walk. We also had a photography competition for adults. We find that photography is very popular because people can take images and then take their time to focus and look at them in more detail afterwards.
And you have your annual Open Day coming up in September?
Yes, it’s on Saturday 25th September. Like last year, it will be a virtual event. This means that anyone is welcome to join us, wherever they are in the world. We are planning a packed programme of inspirational speakers, presentations, research updates, workshops, forums and competitions as well as a fun networking event in the evening.
How can we find out more information?
You can phone us on 01427 718093 or email us.
You can also visit our website and follow us on social media:
