Tag: Open Day

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.

Joanne smiles at the camera. There is an open piano in the room behind her.

An interview with Joanne

Violinist, soprano, opera impresario and Nystagmus Network member, Joanne Roughton-Arnold chats with Nystagmus Network’s Sue on Saturday 3 October as part of the Nystagmus Network virtual Open Day 2020.

Hear Joanne talk about her experiences of her childhood and offer inspiration to young people with nystagmus dreaming of a career in the performing arts.

Register for all Open Day presentations here

A postcard to advertise virtual Open Day on 3 October, showing a selection of images of the highlights to come.

Want to meet up?

You’re warmly invited to join us for one or more of our upcoming forums in the run up to Open Day 2020.

Because we know that one of the ‘best bits’ of Open Day is meeting up with others, we’re holding a series of online forums to help you do just that.

In August and September, we’ll be hosting some great opportunities for you to network and chat with other people living with nystagmus or other parents.

Parents’ Forum
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to network, chat and ask all your burning questions.

Thursday 13 August at 7.30pm
Parents sign up here
Adults’ Forum
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to meet up and share notes with other adults living with nystagmus.

Thursday 27 August at 6pm
Adults sign up here
Acquired Nystagmus Group  – meet the expert
A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to hear an expert speak about acquired nystagmus and ask questions.

Date and Time to be confirmed
Acquired Nystagmus sign up here
Front cover of the book 'Can I tell you about nystagmus?'.

Can I tell you about nystagmus?

The Nystagmus Network is delighted to share news of the launch today of a brand new book about nystagmus.

Written by Nadine Neckles, the book looks at nystagmus from a child’s point of view and provides insights for parents and professionals alike.

Nadine is a friend of the Nystagmus Network and previously contributed an article about her daughter’s nystagmus for our fortnightly newsletter, Focus, in June 2017. Read her article in full by clicking here.

Since then she has continued to parent her daughter, who also has Chromosome 18q-, whilst writing her blog, Caring in the Chaos.

Meet Nadine at Open Day

Nadine will be joining us at Open Day 2019 on Saturday 28 September. Delegates will have an opportunity to meet her and chat with her about bringing up a child with nystagmus and purchase a copy of the book, signed by the author.

Nystagmus Network endorsement

The Nystagmus Network’s Sue Ricketts has provided an endorsement for the book:

“Can I tell you about Nystagmus … highlights a much misunderstood condition. Seen from the family’s perspective, the description of the way nystagmus affects the daily life of a young child will be informative and reassuring for other parents.”

Order your copy today

The book is available to order directly from the publishers. Please click here for details.

Special offer for members

Members of the Nystagmus Network can purchase the book at a generous 25% discount. Please use the voucher code in your special member email.

Free copies giveaway

The first THREE new members to sign up today will receive a copy of the new book ABSOLUTELY FREE as part of their membership package.

Sign up for membership here.

Congratulations, Marsha

Marsha De Cordova MP, Shadow Minister for Disabilities and MP for Battersea, features in the Shaw Trust’s Disability Power 100 2018. This is well deserved recognition for a person who has worked and campaigned tirelessly for disability rights, especially for those with impaired vision, and continues to do so.

The Nystagmus Network was delighted to welcome Marsha, who has Congenital Nystagmus, as our keynote speaker at Open Day 2018.

You can read details of Disability Power 100 here.

Open Day tickets for members – available soon

Tickets to the biggest UK nystagmus event of the year will soon be available to book. Subscribed members of the charity will be able to book their priority free tickets to our annual Open Day from 12.00 midday on Thursday 26 June. Members will be notified with details of how to book their places by email or post.

Any remaining tickets will go on sale on a first come, first served basis to non-members from Thursday 26 July at £27 per adult, £10 per child.

Sponsors sought for Open Day 2018

The biggest nystagmus event of the year takes place on Saturday, 29 September in Birmingham. This is our annual Open Day, where 200 nystagmus families get together to talk about research, education, support, assistive technology, mobility, education and general day to day living with a visual impairment. The Nystagmus Network is seeking sponsorship from commercial organisations. If you’re interested and would like to find out more, please contact us today.

Priority booking for free tickets to charity members opens at 12:00 on Thursday, 28 June, with any remaining tickets going on general sale from 26 July.

Marsha de Cordova MP – our Open Day keynote speaker

We are delighted to announce that we shall be joined on Open Day this year by Shadow Minister for Disabilities, Marsha de Cordova.

Marsha has nystagmus and is severely sight impaired. She recently explained to BBC Radio 4’s Intouch programme how she manages her vision problem as part of her busy professional life.

The photograph is by Graeme Robertson for the Guardian.

Informative, inspiring, emotional and motivating!

Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.

Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.

The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.

Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.