Category: Events

The Nystagmus Network logo and the words 'parent power'

Parent Power this February

Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.

Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

The one day webinars (10am to 2.45pm) are FREE.

Places on the next February workshop are open for booking.

Book your place for Parent Power on Friday 11 February here

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

The Nystagmus Network logo and the words 'parent power'

Parent Power is back!

Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.

Each webinar will introduce parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

Each session will be led by Karen, a qualified and experienced trainer from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team.

The one day webinars (10am to 2.45pm) are FREE and will be held online from November, 2021 through to March 2022, so there’s bound to be one that suits your schedule.

Places on the next two workshops are already open for booking.

Book your place for Parent Power on Friday 14 January here

Book your place for Parent Power on Friday 11 February here

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

The Nystagfmus Network logo and the words 'nystagmus champions 2021'

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.

The logo of the European Aniridia Conference

The European Aniridia Conference

Aniridia UK will host the European Aniridia Conference online from 31 July to 1 August 2021

The event will combine excellence in aniridia research and clinical practice, plus patient engagement.

Highlights include:

Professionals such as: ophthalmologists, researchers, vision scientists, and geneticists, plus people who have aniridia and their relatives are the target audience.

Find out more and book for free here

Tim Pearce

Thank you, Tim

Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children.

Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky preview, but no spoilers, for his follow up book, due out later this summer. He is currently writing book three in the series.

When asked what spurred him to write, Tim said he has always loved being creative and has a passion for writing strong characters. He also loves a plot twist and tries to cram in as many as he can to keep his young readers on the edge of their seats.

The Nystagmus Network children’s story

Tim then led the children taking part in the online workshop to write their own story, collaboratively, with everyone chipping in ideas for character names, appearance and even the design of their slippers! Tim promises that the nystagmus children’s story will appear as part of his next book.

Order Tim’s book on Amazon Smile here

Inspired by Tim?

Raindrops story writing and drawing competition for children

What do raindrops mean to you? What do they smell, sound, feel or taste like? What do they make you think of? How do they capture your imagination?

The Nystagmus Network Raindrops competition celebrates the wonderful creativity of children’s writing and illustration.

The best stories and drawings will be published in a special book which will be available to purchase from September 2021.

How to enter

The competition is open to all children with or without nystagmus, aged 5 to 14 years. There will be winners in each age category.

Download the competition rules and an entry form here

Completed entries (entry form plus story and / or drawing on Raindrops writing paper or drawing paper) should be emailed to [email protected] Deadline: 23:59 on Saturday 19 June

Prizes and a book

There will be some fabulous prizes for the winners of each age category, including books signed by your favourite children’s author. As many stories and drawings as possible will be published in a book which will be available for sale from September.

Get sponsored

If your little one is a reluctant writer, why not encourage them by asking friends and family to sponsor them 1p a word?

Download a Raindrops sponsor form here

A child takes part in an online writing workshop with author, Helen Rutter. On his desk is Helen's book 'The Boy Who Made Everyone Laugh'.

Children’s writing workshops this summer

Did you miss the children’s online writing workshop with fabulous children’s author, Helen Rutter? What a shame. That means you didn’t get to hear all about Helen’s inspiration behind her book ‘The Boy Who Made Everyone Laugh’ and you didn’t get to meet her dog, Billy Whizz!

Never mind. There are two more workshops still to come.

The first is with ‘Secret Agent Striker’ author, Tim Pearce and the second is with children’s writer and illustrator, Claire Alexander, author of ‘A Little Bit Different’.

Meet Tim Pearce

Children aged 7 years and up are invited to join a FREE interactive workshop with Tim Pearce, author of Secret Agent Striker. Tim will share his passion for writing, his inspiration and what he plans to write about next. You can send your questions for Tim in advance to [email protected]

Monday 10 May: 4:30 to 5:30pm

Book the Zoom workshop with Tim here

Order Tim’s book on amazon Smile here

Meet Claire Alexander

The Nystagmus Network welcomes children aged 7 years and up to a FREE interactive online workshop with Claire Alexander, author of A Little Bit Different and her new book A Little Bit of Courage. Claire will share her passion for writing and illustration her inspiration and what she plans to write about next. You can send your questions for Claire in advance to [email protected]

Thursday 17 June: 4:30 to 5:30pm

Book the Zoom workshop with Claire here

Order Claire’s books on Amazon Smile here and here

A screen shot of the Nystagmus Network presentation at the VIEW conference 2021

Sue’s at VIEW

The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually.

The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown.

Sue’s virtual presentation on nystagmus in the classroom is exciting lots of comment and discussion online among delegates. Some of the topics they’re talking about are exams arrangements, work sampling and how to mitigate against potentially disruptive behaviour.

You can find information for parents and teachers in our searchable Education Resource HUB here