Nystagmus Awareness Day 20 June 20

Nystagmus Awareness Day – 20 June 2020

It’s national and international Nystagmus Awareness Day on Saturday 20 June 2020. We may all be staying at home this year, but we can still mark the day and raise awareness to ensure that the 1 in 1,000 adults and children living with nystagmus enjoys a greater understanding of their condition and a better quality of life as a result. Here are just some of the ways people can get involved.

How amazing are you?

In the lead up to the big day, the charity is running its ‘how amazing are you?’ campaign, sharing stories of adults and children who have achieved great things despite living with nystagmus, or maybe even because they do. These stories bring a great deal of hope and comfort to families where there is a new diagnosis of nystagmus. Anyone who has nystagmus can submit their story.

Our wobbly photography competition

We want to raise as much awareness of nystagmus as possible this year and make sure that everyone has a chance to take part, so we’re running our wobbly photography competition: The View From My Window

We know that lots of people who have nystagmus are also keen photographers. Most notably, of course, is internationally acclaimed photographer, David Katz.

David revealed only in recent years, in his film “Through my Lenses” that he has ocular albinism and nystagmus and is actually registered blind. Nevertheless he has enjoyed a stellar career in photography and has created some of the most iconic press images.

When the charity asked him to judge the competition, David said “I would be absolutely delighted and very honoured to judge the Nystagmus Network competition … It has constantly amazed me since making my story public how many of us with VI are into photography.”

Whether you have nystagmus or not, whether you have the latest camera or just a phone, and wherever you are in the world, you can take part.

Nystagmus is …

The charity launches a brand new publication, Nystagmus is …, inspired by 80 year old Roger, on Nystagmus Awareness Day 2020. The booklet is full of contributions from people, like Roger, who live with nystagmus, describing how they feel about it and how it affects their lives. For the first time people can read what it’s really like to have nystagmus by the people who really know.

Nystagmus is … will be available FREE from the charity’s online shop from 20 June 2020.

Why do we need Nystagmus Awareness Day?

The Nystagmus Network raises awareness of the condition every single day of the year, because they believe that the more people who know about it the better. It means that adults and children who have nystagmus will get the help, support and services they need in education, employment, health, mobility and leisure to be able to lead a successful and independent life.

The charity’s Information and Development Manager, Sue Ricketts says: “Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that the Nystagmus community is here and their voices need to be heard.”

Every time someone takes part in Nystagmus Awareness Day or tells someone what they’re doing and why, that’s one more person who understands what nystagmus is.

Every pound raised or donated helps the Nystagmus Network support research teams across the UK to investigate this hugely complex condition, to find better diagnosis, treatments and continue to work towards prevention and cure.

Ends

Notes to editors

Contact: Sue Ricketts, Nystagmus Network

Email: [email protected]

Tel: 01427 718093

Website: https://nystagmusnetwork.org/nystagmus-awareness-day/

Facebook: https://www.facebook.com/NystagmusNetwork/

Twitter: https://twitter.com/NystagmusUK

Images and logos available on request

Nystagmus is a serious, lifelong, incurable form of visual impairment where the eyes constantly move uncontrollably, affecting focus and depth perception. At least 1 in 1,000 babies are born with nystagmus. Many other people acquire nystagmus beyond infancy and into later life.

The Nystagmus Network is a registered charity in England and Wales, number 1180450. Our charitable objectives are to provide support and information, to raise awareness and to fund research.

Nystagmus is … a guide for adults

A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline his suggestion of asking people who live with nystagmus to describe it for others.

The end result of that project is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time you can read what it’s like to have nystagmus by the people who really know.

When we shared an advance copy of Nystagmus is … with Roger, earlier this week, he said:

“It’s fabulous and should open up a whole new understanding of vision disability awareness and training. I am proud to have been part of it and proud that you took up the challenge of getting and sharing your members’ feedback.”

Download your copy of Nystagmus is … here

A YouGov nystagmus awareness survey

The Nystagmus Network commissioned a YouGov survey in May 2020, ahead of Nystagmus Awareness Day on 20 June, to see how aware the UK population is of nystagmus. The survey was free of charge, thanks to a competition, run by the Small Charities Coalition of which we are a member.

The headline results

82% of people have never heard of nystagmus

14% said a friend, acquaintance or family member has the condition

Misconceptions about nystagmus

Once we had explained what nystagmus was, we asked people in what other ways they thought nystagmus might affect a person apart from their eyesight. Alongside the usual suggestions of difficulties with reading and writing, employment, socialising and getting around, a startling 24% thought that people with nystagmus would also have learning difficulties.

One of the Nystagmus Network’s strongest messages is that, whilst nystagmus can affect access to learning, it definitely does not affect ability to learn.

It seems we still have some way to go in delivering this message.

Awareness improves quality of life

Finally, we asked what people thought would most help improve the quality of life of people living with nystagmus. The most popular suggestions were medical research, access to information and adapted technology, with 59% agreeing with us that greater awareness in the general population helps those living with the condition.

We are grateful to YouGov and the Small Charities Coalition for this opportunity to poll the UK population at large and pleased to report that all 250 of our respondents are now ‘nystagmus aware’.

The Nystagmus Network receives £8,000 from the National Lottery to increase our support services

The Nystagmus Network is delighted to have been awarded just over £8,000 in National Lottery funding to underpin its work supporting adults with nystagmus. The charity will use the funding to expand our support services to meet the greater needs of the nystagmus community during the pandemic and particularly to reach those who are isolated and would not normally turn to the charity for help.

With events and meetings postponed for now, the charity is continuing to run its support and information services during the current pandemic, by phone, email, on social media and via the website.

The new funding from The National Lottery Community Fund, which distributes money raised by National Lottery players for good causes and is the largest community funder in the UK, means we will be able to increase our reach by offering our services to an ever wider nystagmus community.

There are many people living with nystagmus who have not needed our support until now, but in lockdown they have been experiencing additional problems with shopping, social distancing and spending time outside. They have also been feeling increasingly isolated. We can now let people know that we are here for them.

Sue Ricketts says: “We’re delighted that The National Lottery Community Fund has recognised our work in this way. Now, thanks to National Lottery players, we will be able to let far more people know we are here and can offer support and information on a whole range of things from accessing help with shopping locally to benefits advice and more.”

About The National Lottery Community Fund

We are the largest community funder in the UK – we’re proud to award money raised by National Lottery players to communities across England, Scotland, Wales and Northern Ireland. Since June 2004, we have made over 200,000 grants and awarded over £9 billion to projects that have benefited millions of people.

We are passionate about funding great ideas that matter to communities and make a difference to people’s lives. At the heart of everything we do is the belief that when people are in the lead, communities thrive. Thanks to the support of National Lottery players, our funding is open to everyone. We’re privileged to be able to work with the smallest of local groups right up to UK-wide charities, enabling people and communities to bring their ambitions to life.

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Nystagmus Network launches webinar series for clinicians

Nystagmus Network launches online CET webinars for eye-care professionals

The Nystagmus Network charity was founded in 1984 to support patients living with the condition. They currently have 500 members but estimate there are more than 64,000 patients in the UK living with the condition that they would love to support. This is why they want to expand their reach to engage with eye-care professionals to raise awareness of the charity and encourage referrals.

Daniel Williams, Trustee said “We are delighted to launch our new eyecare professional CET webinars and host some of the ground breaking speakers. We are a small charity wanting to grow our membership and engagement for the benefit of our beneficiaries”.

The Nystagmus Network is a registered charity in England and Wales, number 118450. They provide support and information to people living with all forms of nystagmus and the professionals who work with them.

Nystagmus is a complex, incurable eye condition characterised by involuntary movements of the eyes where they appear to wobble or flicker from side to side, up and down or round and round.

Nystagmus affects ability to focus, recognise faces and judge speed and depth.

The charity offers support and information to the 1 in 1,000 or more people affected by nystagmus, raises awareness through an annual Nystagmus Awareness Day on 20 June, whilst also investing in research into the condition to find a potential treatment.

Below is a list of the upcoming webinars you can book on. Each webinar will give delegates 1 CET point.

Nystagmus Network CET Webinars

The Nystagmus Network is delighted to host a series of webinars all about nystagmus for eyecare professionals. Each Webinar will provide 1 CET point.

Tuesday 26^th May – 10:30

A Clinician’s Guide to Nystagmus

Nystagmus affects 0.24% of the population, yet it is a very poorly understood condition. Optometrists will regularly encounter patients with the condition in practice, especially in the low vision setting. Knowing how to modify routines appropriately, as well as how to classify and potentially refer patients for treatment, will help maintain high clinical standards.

This lecture will provide an optometrist’s up-to-date guide to nystagmus, covering diagnosis, classification, and how to modify a standard routine. Currently available treatments will be discussed.

Delivered by Dr Matt J Dunn who is a lecturer and optometrist at Cardiff University. His research focuses on clinical disorders of visual perception and oculomotor control. At the School of Optometry and Vision Sciences, he teaches clinical orthoptics. Matt is the author of the mobile ophthalmology reference text Dunn Vision Reference.

Wednesday 27^th May

Diagnosing Nystagmus – how, why and when?

Jay will be talking about how Optometrists might approach patients with nystagmus and tips and tricks about what to look for, deciding how urgently to refer and what happens once they reach a specialist centre. No prior knowledge is expected!!

Delivered by Jay E Self BM FRCOphth PhD who is a Consultant Paediatric Eye Surgeon and Associate Professor at the university of Southampton. He runs a research group with an interest in nystagmus, albinism and childhood visual disorders and works closely with Helena Lee who is also a Consultant and Associate Professor in Southampton. Jay is a medical advisor to 4 support charities, a board member of 2 charities and ambassador for one. He has worked both as a researcher and clinician in the field of nystagmus for 15 years. He is a founder member of the Nystagmus UK Eye research group (NUKE).

Thursday 28^th May – 10:30

Testing, Dispensing and Supporting Patients with Nystagmus

The holistic view of supporting a patient with nystagmus. A practical approach on how to test, dispense and support a patient with Nystagmus.

Delivered by Bhavin Shah, Behavioural Optometrist and Jayshree Vasani, Dispensing Optician. Bhavin is passionate about lifelong learning and technology to enable patients to optimise their vision. Jayshree is passionate about supporting patients with visual impairments and empowering the profession with her knowledge.

Contact

Sue Ricketts, Executive Information and Development Manager

Tel: 01427 718093

Email: [email protected]

LinkedIn: https://uk.linkedin.com/in/sue-ricketts-38305b176

Enquiries

Tel: 01427 718093

Email: [email protected]

Website: https://nystagmusnetwork.org/

Let’s go for an eye test!

Our next webinar is all about going to a high street optician’s when you have nystagmus.

Tuesday 12 May at 3pm

You have had an eye test … what now ?

An interactive webinar for the nystagmus community.

Jayshree Vasani (Dispensing Optician) and Sarah Arnold (Optometrist) want to dispel the myths around what happens after the hospital appointment.

What happens when you are discharged from the hospital eye service in to community practice?

Why is it vital that you have regular eye checks?

How do I get the very best vision for my child?

What is a Dispensing Optician and Optometrist?

How can professionals in eye care work together to benefit me or my child?

These are questions we want to discuss and answer!

So join us for this webinar!

We are excited to be meeting you all online and are looking forward to the question and answer session!

See you there!

Jayshree and Sarah

CLICK OR TAP HERE to book your place

Sue’s still knitting!

From now until 26 May, this is Sue’s daily schedule:

45 minutes yoga

8 hours working at the Nystagmus Network

1 hour walking her dogs

Then carry on with her Two Point Six Challenge for the Nystagmus Network: knitting 26 mascots by 26 May.

You can sponsor Sue here.

To pre-order your nystagmus 2.6 challenge mascot, please CLICK HERE.

How amazing are you?

In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories.

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed.

In previous years we’ve heard some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus.

Let’s make 2020 even more amazing!

Email your amazing nystagmus stories, plus photo, please, to [email protected].

Sue’s Two Point Six Challenge

Sunday 26 April 2020 was to have been the date of the London Marathon with runners raising £millions for UK charities.

The Nystagmus Network’s runner, Adam, is still training to run in the postponed race in October.

Meanwhile, the organisers have launched The Two Point Six Challenge to help save the UK’s charities by giving us an opportunity to raise some funding to keep us going. It’s also completely safe and a bit of diversion during lockdown.

The Nystagmus Network’s Sue is amongst those taking up the challenge.

The idea is that you set yourself a target based around the numbers 2, 6, 2.6 or 26.

Sue says: “I can’t run a marathon, but I can knit!
Nystagmus Network mascots usually wear woolly hats and scarves, but for my 2.6 challenge I’m going to knit 26 mascots wearing running kit by 26 May. Please sponsor me if you can and wish me luck!”

You can sponsor Sue here.

To pre-order your nystagmus 2.6 challenge mascot, please CLICK HERE.

People queue with trolleys in a supermarket car park

Your food shopping experience

How are you getting on with shopping for food?

What are your experiences of queues, social distancing, assistance available in store?

Have you managed to secure online delivery slots?

The Nystagmus Network continues to lobby alongside other bigger VI charities (please see this recent Daily Telegraph article) for the rights of people with nystagmus and other sight conditions to have priority treatment for both online and in store shopping, alongside other disabled people, and for there to be more understanding about the need to pick up packets and tins to read the labels if a fully sighted friend, family member or member of store staff is not available/allowed to assist.

We will also raise a question with Sight and Sound at our forthcoming webinars about the best aid to reading labels.

Please contact us with your thoughts and comments.

Thank you