James and Thomas’s Summer Challenge

James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart.

James (8) and Thomas (5) have decided to challenge themselves to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and the Nystagmus Network. This means an average of 3.8 miles per day consciously walked to get to their target.

Why these charities?

When James was 10 months old he was diagnosed with Nystagmus. He is registered visually impaired as a result.

James was later diagnosed with a very rare genetic disorder called Chromosome 18q-23 distal deletion syndrome.

At least 1 in 1,000 babies are born with nystagmus.

Chromosome 18q- effects 1 in 55,000 births.

Having both is super rare!

So that Chromosome 18 Registry and Research Society Europe and the Nystagmus Network, two tiny charities, can continue to offer support to families just like James’s, please sponsor the boys today.


How amazing is Freya?

I was born with nystagmus and always struggled at school both in the classroom and in PE. All throughout my education it’s been a continuous trip to the printer to enlarge text books and print outs. Things didn’t really change at college. I was told I had dyslexia which could be linked to the nystagmus, because of the way my brain is seeing the words. I was offered support sessions to look at alternative methods of learning. I then went on to university and this year I am graduating! I have studied law for the past three years and in September will be going on to train as a barrister. I anticipate many challenges due to nystagmus such as mock court situations. Reading facial expressions and looking at evidence may be challenging, but nystagmus won’t stop me.



Manchester half marathon places available

Would you like to run the Manchester half marathon this October to raise money for the Nystagmus Network?

The race takes places on Sunday 14 October. It starts and finishes by the iconic Emirates Old Trafford, Lancashire Cricket Club.

The event boasts one of the fastest, flattest and friendliest courses on a completely closed road route, through the streets of Greater Manchester This makes it perfect for first time charity runners or those looking for a PB alike.

All we ask in return for your free place is that you:

  • undertake to raise at least £100 in sponsorship
  • set up a Justgiving page for your sponsors
  • wear your free Nystagmus Network running vest

If you’d like to apply for a place, please complete the form below. Thank you.


A child swimming underwater.

How amazing are you?

Have you done something amazing, something you never thought possible, because you have nystagmus?
Has your child exceeded all your expectations?
If so, we want to hear from you.
Last year we heard about the fantastic swimming and fundraising achievements of Annabelle, Tyler and Poppy. This year we want to hear your stories.
Between now and 20 June, Nystagmus Awareness Day, we’re collecting all those lovely stories of adults and children who’ve achieved great things despite having nystagmus, or maybe even because they do.
We’ll feature all the best stories right here on our blog and on our Facebook page, so everyone can celebrate with us your amazing nystagmus successes.
If you’d like to help us to support everyone with nystagmus to be amazing, please text ZING18 £5 to 70070. Thank you.
Please complete the form to let us know about your amazing nystagmus success story.
Children sit around a mat interacting with their teacher.

Nystagmus Awareness Day – for schools

Schools can take part in Nystagmus Awareness Day, especially if there is a pupil who has nystagmus. Talking about nystagmus, celebrating ‘nystagmus in the open‘ will help us raise awareness of the condition and help the children affected explain it to their friends. This can help remove the sense of isolation some children feel. We have a free to download PowerPoint presentation, perfect for assemblies and form time, a Lesson Plan and our special booklet for children, Wobbly Eyes. If you would like some balloons, please contact us.

If you would like to help us fundraise on the day, with a bake sale, fun sports or non-uniform day, you can publicise your ‘nystagmus in the open‘ event with one of our free flyers. There is even a template, so that the children can make their own bunting. They are all free to download.

Thank you for your support, from everyone in the nystagmus community.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus Awareness Day – for sports clubs

Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please organise a fun sports day or a try out session at your local club or recreation ground and invite everyone to come along. We have free flyers to help you publicise your event. There is even a free bunting template. But if you would like some balloons, you will need to contact us, please.

Last year, with the ‘nystagmus big swim’, we proved that people with nystagmus can be amazing swimmers. Our nystagmus water babies also helped us raise a lot of money through sponsorship. You can help us achieve the same success this year.

Thank you for your support.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus in the garden

To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting!

Sue and her husband have been members of the charity since their daughter was diagnosed with nystagmus in 1991, during the first few weeks of her life. Sue has served as a trustee, volunteer parent adviser and is now an employee.

If you can’t make it to Sue’s garden, please consider making a donation to her Justgiving page instead. Thank you.

If, like Sue, you would like to open your garden for Nystagmus Awareness Day, you can download a free poster or flyer. For more details about this ‘nystagmus in the open‘ event or for advice on how to organise your event, please call Sue on the charity information and support line: 01427 718093.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus Awareness Day 2018

The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day.

Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.

In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.

To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.

Please watch our blog and social media posts for further news.

A very wobbly unicycle ride

On Saturday 29 October young Research Orthoptist, Daniel Osborne, kicked off a whole raft of Wobbly Wednesday activities at the Southampton Eye Unit in real style by riding a 12 mile route around the town on his unicycle.

Fuelled by dates, flap jack, fed to him at regular intervals by his stalwart outrider, Kathryn Greenhalgh, who rode the entire distance with him on a bicycle, as well as a desire to help idiopathically visually impaired children, Dan cycled from Winchester to Southampton to raise money for the Nystagmus Network and awareness of nystagmus.  His journey covered some 20km and took just under 3.5 hours.

Dan sends out a special thank you to everyone who met him at the finish line and a very big thanks to everyone who has donated to his Just Giving page. So far Dan has already raised almost £500 but the page is still open so anyone wishing to donate can do so here https://www.justgiving.com/fundraising/Daniel-Osborne5

There will be lots more Wobbly Wednesday events happening in the Eye Unit this week, so why not go along to join in the fun alongside the Nystagmus Network’s Chairman, Richard Wilson, if you’re in the area.

dan-unicycle-finish-line dan-preparing-for-his-ride

Fundraising for the Nystagmus Network

Our latest video blog features an interview by our very own Sue with two of the charity’s fundraisers! Gavin and Paula Birch recently held a fun day and football match for the Nystagmus Network where they were able to raise funds and awareness of the condition. Their daughter Freya was diagnosed with nystagmus when she was eight weeks old and they want to help the charity and other families in any way they can.

Everyone at the charity would like to say a big thank you to Paula and Gavin and if you would like to make a donation to their event you can do so here http://www.justgiving.com/nystagmusroyalqueenfc.