Joanne - head shot

Joanne sings for the Rising Phoenix

The voice of Nystagmus Network member, acclaimed soprano and Open Day 2020 keynote speaker, Joanne Roughton-Arnold features in the inspirational documentary, Rising Phoenix, a Netflix production charting the history of the Paralympic Games through the personal stories of some of the sports stars themselves. 

Described by Daniel Pemberton, the film’s musical director as “an incredibly talented partially sighted opera singer”, Joanne, who has nystagmus, says it was “a privilege to be part of this immensely powerful film”.

Joanne sings the theme to Paralympian, Bebe Vio’s story. The medal winning fencer is known as ‘the rising phoenix’.

Watch the official trailer of Rising Phoenix here

Join the Nystagmus Network for The 2.6 Challenge

Calling all nystagmus heroes …

You, your family and friends are warmly invited to take part in The 2.6 Challenge from Sunday 26 April to help to save the UK’s charities.

The Covid-19 pandemic has had a devastating effect on charities, with the cancellation of 1,000s of events and the loss of £billions in fundraising income.

In response, the organisers of the biggest mass-participation sports events across the country have come together to create a new campaign to raise vital funds to help to save the UK’s charities, including the Nystagmus Network.

The 2.6 Challenge will launch on Sunday 26 April – the original date of the 40th London Marathon, the world’s biggest one-day annual fundraising event.

We’re asking you to take part in an activity of your choice based around the numbers 2.6 or 26 and fundraise or donate to support the Nystagmus Network with

People of all ages are taking on The 2.6 Challenge with all kinds of activities – from walking, running or cycling 2.6 miles, juggling for 2.6 minutes, to holding online workouts with 26 friends.

The ideas and options are endless!

Just remember, please, that you must follow Government guidelines on exercise and social distancing.

Most people are taking part from Sunday 26 April, but you can do your activity whenever suits you best.

There are just five simple steps :

1.      Dream up your 2.6 challenge – if you need help there are lots of ideas here

2.      Head to to donate £26 – or the amount of your choice ­– to the Nystagmus Network or to set up a fundraising page

3.      Ask all your friends and family to sponsor you and challenge them to do their own 2.6 Challenge

4.      Complete your challenge

5.      Share a photo or video of your challenge on social media using #TwoPointSixChallenge

We hope you’ll join the nation in The 2.6 Challenge to support the Nystagmus Network and help to save the UK’s charities.

THANK YOU for your support

Visit The 2.6 Challenge website here

Children wearing Nystagmus Network T shirts and the words Thank you from Nystagmus Network.

Thank you, Shirley

The Nystagmus Network would like to say a huge thank you to Shirley Pennington, her family, friends and local Shropshire community. Shirley recently organised an auction of promises to raise money for the Nystagmus Network.

Shirley’s event raised a phenomenal £16,625!

The auction was in part a celebration of Shirley’s son, James’s marriage to Rhiann and in honour of her granddaughter, Charlotte, who has nystagmus.

The event was supported by the local WI and contributions came from many quarters. Both the family and the charity were astonished by the level of support. The auction included 70 lots, ranging from a crocheted cushion to a day with the muck spreader!

Cheques to the value of £16,625 were handed over at a recent WI meeting to longstanding Nystagmus Network member, supporter and volunteer, Andrew Black who lives locally and has a grown up son with nystagmus.

The money raised will go towards the charity’s investment in a brand new post-doctoral project in nystagmus research, bringing a new expert into the field, and will help make a huge difference to the future of nystagmus for us all.

Thank you, Shirley and everyone for your inventive promises and generous contributions.

The picture shows Rushbury and Cardington WI chair, Kaye Smith, James, Charlotte, Rhiann and Andrew

Roger stands in his garden.

How amazing is Roger?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Here’s a story we just had to share. When Roger contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” We were hooked. Roger went on to describe how nystagmus affects him and he wants to encourage others to do the same so that everyone knows what it’s like. What better way to raise awareness of nystagmus?

Please read Roger’s description of his nystagmus and then scroll down to enter our ‘wobbly week’ competition.

This is me – Maximising minimal vision

What I see depends as much on my brain as my eye defect

My brain constantly makes the best guess about what I see. The smallest visual clue can be enough for me to guess/know what I am looking at.

I get tired, looking

It’s hard work with so few clues and so much effort and I get quickly tired trying to sort the detail, especially with reading print and close work.

Camera rules

I see best with the light source behind me without shadow, nothing dazzly in front. I need to move my head a lot to get the delicate focus right.

Colour contrast

If you want to get my attention, choose the colour of the object or word in contrast to the background.

Recognising people

Sorry, but unless I am expecting you, I am likely not to know who you are, even if you are friend or family.

Seeing steps

I might see steps up, but not steps down so please brightly mark step edges if you don’t want to be the cause of my fall.

Changes in light level

Be aware my level of seeing could suddenly change for the worse when moving from one situation to another.

Writing to me

I can read clear bold print this big (24 font) for a little while but not joined up or handwriting.


Sorry I can’t see the expression on your face so please make it clear how you feel.

My turn

I probably won’t know when it is my turn unless you make it clear to me.


Nowadays, I am not at all embarrassed by my sight loss, but as a youngster it was very different.

Seeing Colours

I see colours really well but not shapes and outlines.

Worsening vision

I am conscious my sight is getting worse and I am taking steps to cope with all this.

Close up

Close to my nose and with a powerful magnifying glass, I see more detail.

Dual sensory loss

More and more I experience a kind of sensory bombardment which is quite disturbing.


Inspired by Roger, we’re running a wobbly week competition asking you to describe your nystagmus in just a few words. For a chance to win some fabulous prizes, please enter the competition, here.

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.