An Illustration of a vwery colourful friendly monster. He is green. He wears pink polka dot pyjamas and fluffy red slippers.

Kevin the Monster comes to life

Did you know that a very special group of young people with nystagmus have helped children’s author, Tim Pearce create a character for his brand new book, Secret Agent Striker Strikes Back?

Tim was kind enough to run a children’s story writing workshop for us last year. Tim and the children created a story and a brand new character together. That colourful character was Kevin the Monster. Here’s how it happened, by Tim:

“In May 2021, I had the pleasure of sitting down with an amazing charity called Nystagmus Network for a ‘meet the author’ event.

The love and positivity the children displayed throughout the story showed that we should treat everyone the same, regardless of differences. I am proud to have had the opportunity to have written this story with them and would like to say a massive thank you to Ameerah, Oscar, Hannah, Josh and Abbie, along with the other children who contributed to the story.” – Tim Pearce

Kevin has been brought to life from the children’s imaginations by Tim’s regular illustrator, Jodie Dowie.

Here’s what we think of Kevin.

“Very colourful, fun rainbow horns. It’s great to see our ideas put together.“ – Ameerah

“Please thank Jodie for this fantastic illustration! The colours are so vibrant and eye catching and I love the cave with all the little details. He looks actually very friendly and approachable in his eyes despite his giant size and appearance. Perfect!” – Karen Chu, Trustee

“Oh, my goodness the slippers!!! Kevin is truly amazing. The children will LOVE him!” Sue, Nystagmus Network

The book costs £7.99, includes the above image of Kevin the monster and an acknowledgement of the children from Tim and is in nystagmus friendly large print.

Order Secret Agent Striker Strikes Back from Smile Amazon here

Raindrops on World Book Day

In celebration of World Book Day 2022, we are pleased to announce the publication of the Raindrops story book.

This digital publication includes the winning stories, inspired by raindrops, written by Annabelle, Eliana, Harry and Daria. Read what our esteemed judges thought of their Nystagmus Awareness Day 2021 competition entries and the drawings submitted by Nerea, Myles, Alishba and Luca.

Download your free copy of the Raindrops story book here

With thanks to all the children who took part in the competition, to Josh for the inspiration, to our judges: Tim Pearce, Katherine Mengardon and Nadine Neckles, to children’s authors, Tim Pearce, Helen Rutter and Claire Alexander for their inspirational writing workshops, to our generous sponsors for the prizes and to Nick for designing the book for us.

Our weekend away

Each year the Landmark Trust offers a limited number of stays in their historic properties to small charities. The scheme is called 50 for free.

Late last year the Nystagmus Network applied on behalf of members of our AN and Oscillopsia forum, thinking this would be a lovely chance for them to meet up in person and share quality time in a relaxed setting. Our bid was successful and we have been offered a lovely long weekend stay this March.

Eight people drawn from the forum will travel to their destination and enjoy getting to know each other in person in elegant surroundings.

The Nystagmus Network set up monthly online forums for parents, adults who have congenital nystagmus and adults living with acquired nystagmus in March 2020. The forums have been very popular and continue to flourish with some lasting friendships made along the way. We like to think of them as friendly, informative a little haven away from worries about the outside world.

If you would like to join one of our online get togethers, please contact us by email at [email protected].

Delegates at an interactive CET workshop

Our online training for eye care practitioners

FREE CPD webinars with the Nystagmus Network for Optometrists and Dispensing Opticians

A brand new series of three Nystagmus Network webinars are now available online on demand for high street optical staff. Attendance at each webinar delivers 1 CPD (Continued Professional Development) point, allowing practitioners to maintain their professional standards.

Investigating and managing nystagmus in the orthoptic clinic is by Gemma Arblaster, Orthoptist at Sheffield Teaching Hospitals NHS Foundation Trust and Lecturer in Orthoptics at the University of Sheffield. Gemma also serves as a research adviser to the Nystagmus Network.

Jayshree Vasani, Dispensing and Contact Lens Optician, ABDO practical examiner and CET Facilitator, presents Solutions for patients with nystagmus, exploring dispensing spectacles and contact lenses for patients with infantile and acquired nystagmus.

Looking at nystagmus from the patient perspective, the charity’s Information and Development Manager, Sue Ricketts, entitled her webinar 1 in 1,000 things you never knew about nystagmus, bringing the patient voice to the fore.

The webinars will remain available to eye care practitioners FREE OF CHARGE until 12 May 2022.

Sue Ricketts said: “It is the Nystagmus Network’s ambition to bring eye care practitioners and their practices and the nystagmus community closer together, to build stronger relationships, based on knowledge, experience and trust. We are delighted to have the opportunity to provide professional training to help us work towards this goal, thanks to the support the charity enjoys from clinicians and researchers.”

The Nystagmus Network webinars are online here

Training eye care practitioners

FREE interactive CET webinars with the Nystagmus Network for Optometrists and Dispensing Opticians

This December the Nystagmus Network hosted a further series of three interactive training webinars for eye care practitioners.

Investigating and managing nystagmus in the orthoptic clinic was delivered by Gemma Arblaster, Orthoptist at Sheffield Teaching Hospitals NHS Foundation Trust and Lecturer in Orthoptics at the University of Sheffield. Gemma also serves as a research adviser to the Nystagmus Network.

Jayshree Vasani, Dispensing and Contact Lens Optician, ABDO practical examiner and CET Facilitator, presented Solutions for patients with nystagmus, exploring dispensing spectacles and contact lenses for patients with infantile and acquired nystagmus.

Around 200 practitioners attended each webinar over the course of three evenings. They were very well received with one attendee, speaking for many, saying “Thank you for such an interesting and informative set of lectures. I felt they were a cut above a lot of CET. Well done!”

The charity began delivering CET training in May 2020 and is planning more online and in person interactive workshops and courses in 2022.

A graphic of Mike dressed as the wiggly eyed warrior.

Wiggly Walk 2

The amazing Mike Larcombe, nystagmus champion extraordinaire is at it again!

You will remember, of course, that in 2019/2020 Mike walked the entire length of New Zealand to raise awareness and funds for nystagmus research.

New to Mike’s story? Catch up on the all the highlights here

This New Year sees Mike embark on another ‘out of this world’ challenge.

Never one to let the grass grow under his feet, Mike, the self-styled “wiggly eyed warrior” in reference to his own nystagmus, is embarking on Wiggly Walk 2. The new ‘walk’ is actually a bike ride – around the entire island of Tasmania.

Mike says: “I will be riding a bicycle around Tasmania for Nystagmus Network because together we can help find a cure for nystagmus”.

Find out more about Wiggly Walk 2 here

The Nystagmus Champions of 2021

Nystagmus Network Vice-chair, Peter Greenwood, was delighted to announce the ‘nystagmus champions’ of 2021 at the end of Open Day party on 25 September.

Tyler Urquhart
The Urquhart family are, quite literally, tireless supporters of the Nystagmus Network.
This year they walked ran or swam 200km over 30 days. Everyone took part, even the dog!
We like to encourage children and young people to own their nystagmus and help us raise awareness on Nystagmus Awareness Day.
11-year-old Tyler always goes one better than that. In previous years he’s organised a sponsored school walk and a quiz and even approached local businesses for prizes for the winning and losing teams.
This year he was hard at it once again, manning a stall in his Nystagmus Network T-shirt, helping his family smash their £250 fundraising target. We hear he did a lot of the running, walking and swimming, too! Well done, Tyler.

Sarah Mills
There aren’t many people in Derbyshire who haven’t heard of nystagmus. That’s all down to one woman, Sarah Mills.
Sarah has been running for the Nystagmus Network for a number of years and achieving some really great press coverage along the way.
This July she excelled herself, completing the Peak District Ultra Challenge – 100km in 24 hours.
Not only that, but she persuaded scores of local businesses to donate raffle prizes, too.
Sarah has raised over £2,000 this year, for the nystagmus community and for her beautiful daughter, Delilah.

James Singleton
We first heard from James when he contacted the charity in December 2020 to let us know he’d signed up for the 19-21 challenge. James’s challenge was to run 300km in January 2021. He was doing it for his son, his ‘little champ’.
This being James, he got a whole lot of mates involved. There weren’t many people in Jersey who hadn’t seen a bright blue T-shirt go flashing past by the end of the month.
Together they raised over £1500.
In June 2021 James was at it again, running the Canaccord Half Marathon in Jersey, with his sister, Laura. Together they raised another £680.
In September James held a Nystagmus Network charity day at his golf club. James and his fellow golfers raised over £5,000 and a very good time was had by all.

Thank you to all three of our Nystagmus Champions of 2021 and to all our wonderful supporters.

Front cover of the Nystagmus Network virutal Open Day 2021 digital programme.

Open Day digital programme – out now

All registered Open Day 2021 delegates are now receiving their copies of the digital event programme. This contains all the links to the pre-recorded presentations and the Zoom invitations to the live workshops, Q+A panels, quiz and networking event.

There’s still plenty of time for you to register and take part from 10am on Saturday 25 September.

Register for Open Day here

A postcard featuring some of the highlights of the Nystagmus Network virtual Open Day 2021 on Saturday 25 September.

Register now for Open Day 2021

Nystagmus Network Open Day – Saturday 25 September

We promise a packed programme of presentations, inspirational speakers, research updates, videos, workshops, forums, competitions and so much more – all available wherever you are. Plus, you’re warmly invited to join a fabulous live and interactive networking event. The theme for this year is ‘How amazing are you?‘. We’ll be celebrating all of your successes! Following the success of ‘virtual’ Open Day 2020, we’ll be doing it all again, but this time even bigger and better and, of course, it’s all free of charge.

Register here to attend

Once registered, you will receive a digital programme containing links to all the presentations and live events.