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 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

Want to run a virtual marathon for the Nystagmus Network? You can! Here’s how.

It’s still possible to run a marathon this year. You’ve been keeping fit during lockdown. Your training continued on your daily time outside. All the big runs are cancelled, but … you can still run – on a virtual track with Strava.

Your run, how, where and when you want it – you can even take your time!

Want to run the virtual Great North Run for the Nystagmus Network?

You can! Here’s how:

Virtual Great North Run

Want to run the Edinburgh Festival Virtual Marathon Challenge for the Nystagmus Network?

You can! Here’s how:

Edinburgh Festival Virtual Marathon Challenge

Want to run the virtual 40th London Marathon for the Nystagmus Network?

You can! Here’s how:

London Marathon

Want to run the Brighton Marathon 2020 for the Nystagmus Network?

You can! Find out how, here:

Brighton Marathon 2020

Want to raise some sponsorship for the Nystagmus Network?

You can with Justgiving.

Set up your Justgiving page here

Keeping you connected

The Nystagmus Network is working hard to bring you closer together with other people living with nystagmus or with parents and carers of children and young people who have the condition.

We are now running online support groups for adults with congenital or acquired nystagmus and for parents and carers. You can join zoom chats or stay in touch by email until it’s safe for us all to meet up face-to-face again.

Find out about virtual groups here

The Nystagmus Network plans to set up a range of regional and local nystagmus networks as soon as it’s safe to do so.

We already have a vibrant local group in the Greater Manchester area.

If you’d like to join a local nystagmus network or volunteer to run one in your area, please contact us today.

Find out more about local groups here

The Nystagmus Network eye logo and the words Training the Professionals

Training eye care professionals

High street optical staff need to understand the complexities of nystagmus, how to test the sight and how to dispense any corrective glasses or contact lenses.

Due to the cancellation of so many routine eye clinic appointments during the current pandemic and the signing off of non-urgent cases, such as patients diagnosed with nystagmus, local opticians are now seeing increasing numbers of these patients in their practices.

Following the success of 3 webinars the charity organised and hosted in May 2020, attended by a total of over 900 dispensing opticians and optometrists, the Nystagmus Network is planning to host a further 2 webinars on nystagmus for eye-care professionals.

But we need funding to do this.

That’s why we’re fundraising with The Good Exchange. Please visit our campaign page and share it with your networks.

THANK YOU

See our campaign page here.

2 distance shields alongside 2 Nystagmus Network logos.

Please give me space

Now that lockdown measures are easing, lots of people, including those who are shielding for health reasons, are keen to ensure that social distancing guidelines continue to be followed.

Some blind and partially sighted people are concerned about difficulties with maintaining social distancing and are sometimes even resorting to not going out. If you have nystagmus it can be challenging to judge distances.

That’s why RNIB have worked with the Cabinet Office to develop a series of optional Please give me space badges you can print, wear or show on your phone. The idea is that people will immediately understand that you need space, but may find it difficult to maintain, so will help you by keeping their distance.

The logo of the 'please give me space' initiative - a yellow circle with a person in the centre, with two arrows pointing out to either side to indicate space and the words 'Be kind. Thank you for understanding.'

Find the badges on the government website here.

The Distance Aware initiative

Similarly, the new Distance Aware initiative is also welcome news. Using a series of distance ‘shields’, it enables individuals and organisations to politely prompt ongoing distancing and respect of individual social space. The scheme has recently been endorsed by the Department of Health and Social Care to promote the ongoing need for distancing. Also supported by the Welsh Government, the badge and poster templates are available to download here.

5 different distance aware shields. Each is a different colour with a chevronned border and in the centre a 2-way arrow indicating distance. Image includes logos of the Dept of Helath and Social Care, NHS Wales and the Welsh Government.

The Nystagmus Network hopes that the two schemes will help people living with nystagmus and low vision to stay safe, maintain their quality of life and continue to enjoy their independence.

Technology use in young people with impaired vision

Guest post from Saima Begum, University College London

I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment.

This project aims to examine technology use in young people with vision impairment, and whether this influences their educational attainment.

There is much research that has found that technology such as screen-readers on phones have been useful for people with vision impairment to be able to function in everyday life, so my project is aiming to look at whether technology use can also have positive effects on education.

Moreover, because of the increasing use of social media, I plan to look at whether technology use can have a positive effect on friendships. This data is important to collect as it will show how young people with VI use technology, and how this could be utilised so they perform better in school.

Participants are invited, between the ages of 11 and 18.

All questionnaires can be completed online, and participants can do this from the comfort of their own homes.

Click or tap here for the questionnaire 

The questionnaire is accessible for screen readers. The first page of the questionnaire also includes an information sheet with more details regarding the project.

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
B4 logo

Discrimination against B4 athletes within International Blind Sport

Charities supporting people living with vision impairments, including the Nystagmus Network and the Albinism Fellowship UK, have signed an open letter from B4 International Blind Sports, outlining concerns about discrimination towards athletes classified B4 in international blind sports.  The letter is addressed to the IBSA (International Blind Sports Association) and the IPC (International Paralympic Committee).

Classification currently sees many athletes and sports men, women and young people with nystagmus classified as B4. This means that, whilst their sight is sufficiently impaired to prevent them competing fairly alongside fully sighted people, within the current regulations, they are unable to represent their country in any sport at international level.

We would argue that the B4 classification does not fully recognise the variability of vision or the impact of glare on people with nystagmus and ocular albinism. For this reason the letter includes the following:

“A frustration further compounded by the fact that visually impaired athletes have varying levels of functional vision, and the difference from B3 to B4 is, minimal in some conditions, and could easily be affected by external factors, such as tiredness, light and interpretation of visual cues.” 

B4 International Blind Sports have also set up a petition for anyone to sign who wishes to have blind sports classification re-examined.

Please sign the petition here