Category: Open Day 2020

Front cover of the book 'Can I tell you about nystagmus?'.

Can I tell you about nystagmus?

Can I tell you about Nystagmus? is a guide for friends, family and professionals by Nadine Neckles (illustrated By Vikas Upadhyay).

Sue from the Nystagmus Network talks about Nadine’s book here.

In this friendly guide, a girl called Amber explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help. She invites readers to learn the causes and symptoms, to help others understand the condition and help increase the self-esteem and confidence of those who have it. This accessible guide for children aged 7+ is an excellent starting point for parents, teachers and other professionals working with children with nystagmus. It includes a practical checklist of easy adaptations to make school or home environments easier and more enjoyable for children with nystagmus, as well as a helpful list of recommended resources for additional support.

You can order your copy of Nadine’s book here

The front cover of Claire Entwistle's book 'What seems to be the trouble?'

What seems to be the trouble?

What happens when your health problem just doesn’t seem to tick the boxes?

In her new book, What seems to be the trouble? writer, researcher and practising body psychotherapist, Claire Entwistle describes her one woman quest for a treatment – any treatment – that would help her neurological condition and her nystagmus.

Some people have every reason to be grateful to conventional medicine. It has saved their life, or at least made their life bearable.

Others, with hard to treat conditions that are not easy to classify (perhaps not even easy to spell) have a more complicated relationship with the tests and treatments offered by their doctors and may resort to alternatives, which pose problems of their own.

This unflinching, thoughtful, often witty account of one woman’s experience will be of value to anybody living with a hidden or little understood disability and to those who care for or work with them.

Meet Claire at the Nystagmus Network virtual Open Day on Saturday 3 October or order a copy of her book from the Nystagmus Network online shop.

Order ‘What seems to be the trouble?‘

a postcard advertising the Night in with the Nystagmus Network

Night in with the Nystagmus Network

Virtual Open Day 2020, on Saturday 3 October, will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests. 

This is a fabulous opportunity to meet, chat and network with nystagmus experts, guest speakers and presenters, supporters and members of the Nystagmus Network whilst enjoying a relaxed meal.

Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.

Members registering for this event will receive

  • a set menu to cook at home, purchase as a ready meal or order in
  • a Nystagmus Network cocktail recipe (alcohol free version included)
  • entry to the Nystagmus Network virtual treasure hunt 
  • a zoom link with joining instructions

Not a member, but like to enjoy the Night in with the Nystagmus Network and lots of other member benefits? Please join us today! Annual subscription is £25. Subscriptions help keep the charity going and enable us to continue to invest in nystagmus research.

Become a member of the Nystagmus Network here

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

Booking now for Open Day 2020

The Nystagmus Network has a huge variety of presentations lined up for you at virtual Open Day 2020 on Saturday 3 October.

Enjoy inspirational presentations, research updates and find all the support and information you need, all from the comfort of wherever you are.

Everyone welcome!

Due to social distancing rules still in place, we have decided to go digital! This means that you can attend Open Day 2020 from absolutely anywhere, hear all the latest nystagmus news, get inspired and soak up all the support and information you need, in comfort and safety, wherever you are.

We can promise a stellar list of speakers and presenters, and some fun activities, too, brought to you on screen.

Book your ticket here

Presentations include:

For everyone

  • keynote speaker Joanne Roughton-Arnold, opera singer, founder of FormidAbility, soprano voice of Rising Phoenix and Nystagmus Network member
  • research updates by key nystagmus researchers from across the UK (The School of Optometry and Vision Sciences, Cardiff University; The Ulverscroft Eye Unit, University of Leicester; Moorfields Eye Hospital, London; Royal Eye Infirmary, Plymouth; Academic Unit of Ophthalmology and Orthoptics, University of Sheffield; University of Southampton and Southampton General Hospital
  • Special Education Needs support for children with nystagmus: an update on the legal position in schools in England and in Wales
  • an interview and readings with Claire Entwistle, author of ‘What seems to be the trouble?’
  • building resilience in young people with visual impairment, a session with a QTVI
  • getting the best from an appointment with a high street optician – an optician and a dispensing optometrist explain
  • DLA, PIP and nystagmus, guidance from the Nystagmus Network volunteer benefits adviser
  • student finances and support services for young people with nystagmus heading to university
  • exhibition of assistive technology

For parents

There will be a virtual parents’ forum. 

For adults

There will be a virtual adults’ forum for people living with acquired or congenital nystagmus. 

For children and young people

We’re planning some fun activities which will help our younger delegates make new ‘virtual’ friends as well as an exciting new account on Instagram.

Your virtual Open Day online quiz

Round off your day by taking part in the online quiz. Sign up to take part here.

Exclusively for members of the Nystagmus Network

The following elements of Open Day are open to members of the charity only. If you would like to enjoy full member benefits and privileges, please join us today. Annual subscription is £25.

Phone appointments

Members of the Nystagmus Network will have the opportunity to book timed telephone appointments with a benefits adviser or an education advocate throughout the day. Places will be limited. 

The annual general meeting

Members will also be invited to the charity’s AGM.

Night in with the Nystagmus Network

The day will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests. Members registering for this event will receive a set menu to cook at home, purchase as a ready meal or order in, a Nystagmus Network cocktail recipe (alcohol free version included), entry to the Nystagmus Network virtual treasure hunt and a zoom link with joining instructions. Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.

Booking opened for members on 20 August 2020 

Meanwhile …

Watch the highlights of OPEN DAY 2019 here.

Book here for Open Day 2020

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

a postcard advertising the Night in with the Nystagmus Network

Night in with the Nystagmus Network

The Nystagmus Network virtual Open Day takes place on 3 October, with presentations, workshops, forums and fun for everyone.

The day, full of support and information and everything nystagmus, draws to a close in the evening with the spectacular Night in with the Nystagmus Network, a virtual supper party with an amazing guest speaker.

Night in guests (members of the Nystagmus Network and invited VIPs) will receive a set menu to prepare at home, purchase as a ready meal or order in, the recipe of the Nystagmus Network Cocktail (with an alcohol free version) and your entry form to the Nystagmus Network virtual Treasure Hunt. From 7.30pm onwards you will enjoy the company of your fellow dinners and some special announcements along the way. Plus you will be entertained and inspired by your very special guest speaker, the fabulous Mike Larcombe.

Booking is open NOW.