OPEN DAY


Nystagmus Network virtual Open Day 2020

The Nystagmus Network virtual Open Day took place on Saturday 3 October. All the presentations are now available to view online. If you missed it, it’s not too late. All the presentations are still available to view online. To receive your digital programme containing all the links please email us at info@nystagmusnet.org.

Presentations include:

  • Joanne Roughton-Arnold chats with Sue; opera singer, founder of FormidAbility, soprano voice of Rising Phoenix and Nystagmus Network member, our very special guest chats with Sue about growing up with nystagmus and shares her thoughts on a career in the performing arts.
  • An interview and readings with Claire Entwistle; writer, researcher and body psychotherapist, Claire, chats with Sue about her book ‘What seems to be the trouble?’ and her lifelong pursuit of therapies for nystagmus. 
  • research updates by key nystagmus researchers from across the UK (The School of Optometry and Vision Sciences, Cardiff University; The Ulverscroft Eye Unit, University of Leicester; Royal Eye Infirmary, Plymouth; Academic Unit of Ophthalmology and Orthoptics, University of Sheffield; University of Southampton and Southampton General Hospital.
  • Visiting a High Street Optometrist; Jayshree Vasani FBDO, a Dispensing Optician and Sarah Arnold BSc Hons MCOptom, Optometrist tell us about the services available to people with nystagmus.
  • Resilience and how to boost it; resilience is the ability to overcome adversity, reduce stress and bounce back from setbacks. In her presentation, Alison Blackman QTVI explains how to boost resilience in young people with nystagmus.
  • Going to university with nystagmus; Tara Chattaway from the Thomas Pocklington Trust talks you through the 5 steps to successful university application, including choosing a university, getting support and student finance.
  • Special Education Needs support for children with nystagmus: an update on the legal position in schools in England and in Wales
  • exhibition of assistive technology

Nystagmus doesn’t stop us …

The theme of the Nystagmus Network virtual Open Day 2020 was the phrase ‘Nothing will stop us!”

That’s because we believe that nystagmus needn’t stop you from doing (almost) anything you want to do. 

We asked you what nystagmus doesn’t stop you doing.
Here are just some of your stories.

Sea cadet

Nystagmus doesn’t stop me … being a Sea Cadet. As a cadet I do so much and have earned my STEM badge. I’ve won a swimming competition and the piping competition, where I had to learn how to play a boatswain call. I love being a cadet as it allows me to do so much. 

Eleanor is wearing her sea cadet uniform and smiling at the camera.
Eleanor, 11 years old 

I find it hard to do cadets with nystagmus but I keep trying and everyone helps me and I do everything that everyone else does. I even get to go out in the rowing boats. 

Getting out on the water

Nystagmus doesn’t stop me or my son from getting out on the water. We both have nystagmus and had cataracts removed as babies. 

Hazel and Andrew are rowing a kayak on open water.
Hazel and Andrew, 13 years old

Jumping in puddles

A toddler dressed in pink is splashing in a puddle and smiling at the camera.

Nystagmus doesn’t stop me … jumping in puddles and having so much fun. 

Nystagmus doesn’t stop me … exploring new things and making amazing memories.

Nystagmus won’t stop me … doing the things I love.

Dancing

A series of images of Poppy showing off her dance moves and the words 'be free' and 'dance mode always on'.
Poppy, 10 years old

Running

Nystagmus doesn’t stop me … running, playing and jumping like all my friends. 

Mila-Eve is standing in a playhouse at the park. She is smiling at the camera.
Mila-Eve, 2 years old 

Drawing

Rubyrae's drawing of a young child.
Rubyrae, 14 years old

Scoring goals and writing poems

Landon poses with a football on the pitch.
Landon

Being a nurse

Tracey is wearing her nurse's uniform and a face mask and carrying a gold helium balloon.
Tracey

Creating art

A graphic of an eye with moving eyeball and the words 'you are valid always'
Artwork by SJ

I have nystagmus and I really wanted to demonstrate how valued and important people with nystagmus are through my art.

Travelling all over the world

Chris, China

Taking amazing photos

Photograph by Jonathan