Jon Erichsen speaks with delegates at a Nystagmus Network Open Day.

Take part in research at Cardiff University

Professor Jon Erichsen and his team from the School of Optometry and Vision Sciences, Cardiff University, Nikita Thomas, Katherine Ward and Onyeka Amiebenomo invite you to take part in nystagmus research.

Following their demonstrations at virtual Open Day 2021 of various nystagmus and eye tracking studies currently being carried out, you are warmly invited to apply to take part.

If you’re interested, please complete the form below. We will pass your details on to the Cardiff University team, who will be in touch with you.

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.

A Guide Dogs banner featuring an image of a woman and a yellow Labrador and the words 'We're here to help people with sight loss live the life they choose.'

Free iPads or iPhones for children with a vision impairment aged 3-18

Guide Dogs this week launch a new service, Tech for All, to help children with a vision impairment access their own devices at home – to support learning, or simply to have fun and explore the interests and activities they enjoy. 

Tech for All will provide iPads to visually impaired children aged 3-18 across the UK, whilst secondary school-aged children (11-18) may choose an iPhone instead. The devices have excellent accessibility features built-in and online guides and tutorials will be provided to help them get started and to ensure that they know how to stay safe online. 

The devices will be completely free of charge, with the only requirement being proof of vision impairment. 

More information can be found at www.guidedogs.org.uk/techforall and applications are scheduled to open on Thursday 22 July.  Stocks are limited so apply early to avoid missing out!

Apply here

The logo of Seeing Beyond the Eyes, featuring a woman's eye

Seeing Beyond The Eyes

New CET e-learning enhances skills and accessibility when assisting patients with sight loss

A new CET e-learning course for optical professionals to develop practical skills when dealing with patients with a visual impairment has been launched by award-winning social businessman and Nystagmus Network trustee, Dan Williams of Visualise Training and Consultancy.

‘Seeing Beyond the Eyes’ provides clinical and non-clinical staff with the practical skills and confidence needed to effectively assist people and highlights how to refer patients to vital support services.

It covers sight loss facts and myths, eye conditions and their effects, emotional impacts, certification and registration, referrals to support services, accessibility, assistive technologies, communication, mobility and sighted guiding.

Having lived with sight loss from childhood, Dan fully appreciates the challenges and thanks to his lived and professional experiences, he understands what adjustments are needed and has designed the course accordingly.

He says, “Clinicians would often use medical jargon when talking to me rather than using terms I could understand. Also, there is often a fear of offending someone by offering assistance, but the skills gained by learners gives them the skills and confidence to overcome this.

Eyecare professionals are generally the first point of contact in a person’s sight loss journey so have an important role in empowering patients to access the support they need from organisations such as Nystagmus Network to deal with the initial shock of a serious diagnosis so they can move their lives forward.”

The course provides an ideal induction or refresher tool which can be completed online from any location and qualifies learners for 3 CET points when applicable.

The cost is £40 per learner and it can be completed online from any location.

Click here to find out more and enrol 

For enquiries, please email [email protected] 

A graphic of a woman guiding a sight impaired man down some stairs

New e-learning course enhances skills when assisting people with sight loss

A new e-learning course to develop knowledge, skills and confidence when assisting people with a visual impairment has been launched by award-winning social businessman and Nystagmus Network trustee, Dan Williams of Visualise Training and Consultancy.

Visual Impairment Awareness for All’ is ideal for anyone who regularly interacts with people living with visual impairment as it focuses on the practical and emotional effects and provides solutions to everyday challenges.

It covers identifying sight loss, eye conditions and their effects, emotional impacts, accessibility, assistive technologies, communication, mobility and sighted guiding techniques.

Having lived with a visual impairment from childhood, Dan fully appreciates the challenges and thanks to his lived and professional experiences, he understands what assistance is needed and has designed the courses accordingly.

He says, “There are so many aspects to living with a visual impairment, so I wanted to develop a course that will raise awareness and provide the knowledge and skills needed by everyone who regularly engages with people who have a visual impairment.

For example, there is often a fear of offending someone by offering assistance and not knowing how to guide, so we provide the skills and confidence needed to overcome this.”

The course is ideal for family members and friends and can be used as an induction or refresher course for businesses and organisations as part of their CPD portfolio.

The cost is £30 per learner and it can be completed online from any location.

Click here to find out more and enrol

For enquiries, please email [email protected]

A family smile for the camera. A mother is holding a young child in her arms and the father is holding a cup of tea.

The Nystagmus Care Pathway

Why we need a pathway

Getting a diagnosis of nystagmus for a small baby is an anxious time if you’ve never heard of the condition before. It’s even harder if all the medical information seems a bit bewildering and you don’t know where else to turn for support.

That’s why NUKE (the Nystagmus UK research group) is working to put together the ‘Nystagmus Care Pathway’, a set of guidelines for hospital eye clinic staff to follow so that everyone gets answers to their questions and finds their way to sources of support.

Read more here about why nystagmus clinicians and support providers, including the Nystagmus Network are working for a Nystagmus Care Pathway.

The value of immediate, clear information about nystagmus for families and signposting to sources of support cannot be emphasised enough. Generally, their questions fall into three categories: What is the cause? How will it impact the sight and general wellbeing? What is the solution?

Pinpointing the cause has many benefits for patients. An accurate diagnosis empowers families to talk about nystagmus and advocate for themselves and/or their children. If the cause is genetic the family can know the probability of other children being born with nystagmus.

Parents especially want to understand how nystagmus will affect developmental milestones, education, social interaction and, ultimately, career choice. The first 17 years are of more immediate significance than whether or not the child will eventually be able to drive. Talking about encouraging a baby to explore, the support available in school, learning to ride a bike and making friends will enable parents to understand their needs and make them better prepared to support them and to be positive about their future.

Following the initial shock of diagnosis with a previously unheard of condition, most parents gradually accept that treatments are limited and there is no cure. At this point they can begin to understand the surgical and pharmaceutical options available, refraction and low vision aids, what will help, what will not help and why.

Where clinicians lack the time or experience to answer some of these questions, it is important to steer families away from Google and signpost them instead to national and regional organisations such as the Nystagmus Network, local sight loss organisations, the ECLO or QTVI.

“Your organisation has been a godsend for our families to understand and help our little one. I truly believe some of the advice has enabled him to thrive – and without you that wouldn’t have been possible.” – a parent to Nystagmus Network 2019

“Without the help of you guys and Jay Self at Southampton I would still be rocking in a corner not knowing what to do.” – a parent to Nystagmus Network 2017

The role of Certificate of Vision Impairment (CVI) registration

Based on anecdotal evidence to the authors over 35 years, issuing a child or an adult who has nystagmus with a CVI (Certificate of Vision Impairment) is in most cases very beneficial, enabling them to access support they may otherwise be denied. For instance, it is difficult for a child with nystagmus to get an EHCP (Education Health and Care Plan) without first having a CVI.

A CVI also helps in claiming benefits (Universal Credit, DLA or PIP) accessing sports and entertainment venues, obtaining travel concessions and using the DWP’s (Department of Work and Pensions) Access to Work scheme. Very few patients find CVIs a stigma. They can choose to revoke their CVI if, for example, their vision is good enough to apply for a driving licence at age 17.

Regardless of the effect on visual acuity, nystagmus is a lifelong vision impairment affecting quality of life. Registration can be at the consultant’s discretion.

“I just thought I would let you know the patient you very kindly supplied all of the information for regarding nystagmus and registration was registered SI (Sight Impaired) yesterday. The patient is so very pleased, as this will now enable them to pursue their plans.” – an ECLO to Nystagmus Network 2021

Patient perspective

Ideally, when patients are discharged from hospital they should have a realistic understanding of the impact of nystagmus. This should extend beyond VA and include spatial awareness, challenges with eye contact, facial recognition and visual crowding, the null zone, time to see, the variability of vision and whether or not the nystagmus is part of a progressive or largely static condition.

Families also need to be aware of the potential social and emotional aspects of nystagmus. Research suggests that the cosmetic consequences of nystagmus (abnormal head posture, flickering eyes, difficulty making eye contact) can contribute to social awkwardness, feelings of isolation, low self-esteem and depression.

The challenge for clinicians, at a time when we are still learning about the impacts of nystagmus and how to measure them, is knowing where to strike the balance. On the one hand, patients should not be discharged thinking “nystagmus is the end of the world”. On the other, they should not leave a hospital eye department thinking nystagmus will have no impact at all.

“With thanks to the Nystagmus Network for the sense you help to make of what having nystagmus means and how we and families like ours can support our children to lead amazing lives.” – a parent to Nystagmus Network 2020

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

The logo of Ecclesiastical Movement for Good - a hand over a heart on an orange background.

Nystagmus Network wins £1,000 Movement for Good award

Nystagmus Network wins £1,000 Movement for Good award

The Nystagmus Network has won a £1,000 Movement for Good award from Ecclesiastical Insurance Group thanks to nominations from the public.

The Nystagmus Network is one of 500 winners in specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million to charities this summer.

Although at least 1 in 1,000 people live with nystagmus, when someone is diagnosed it’s usually the first time they have heard of it. This can be a very anxious experience, especially when doctors don’t have the time to explain the full implications of the condition, which is very complex, or how it may affect the sight and offer sources of further information or support.

The £1,000 Movement for Good donation to the Nystagmus Network will pay for a year’s supply of nystagmus leaflets or postcards for eye clinics around the UK. This means that, at the point of diagnosis, patients and their families will be signposted to the charity for information and support, welcomed to the nystagmus community and be able to ask all their burning questions – and, most importantly, understand the answers!

Members of the public were invited to nominate causes close to their hearts, with 500 gifts of £1,000 available for donation. Over 13,000 charities were nominated by more than 210,000 members of the public.

Sue Ricketts, Executive Information and Development Manager at the Nystagmus Network says: “As a small charity supporting a big nystagmus community, the Nystagmus Network is grateful to each and every person who nominated us for this donation.”

Mark Hews, Group Chief Executive of Ecclesiastical Insurance Group, says: “We would like to thank every single person who took the time to nominate a good cause as part of our Movement for Good awards. Ecclesiastical, the fourth largest corporate donor in the UK, is a unique financial services group. We are owned by a charity which means all available profits can be given to the good causes that are so important to our customers. As a company whose purpose is to contribute to the greater good of society, charitable giving is at the heart of our business. We know that £1,000 can make a huge difference to the incredible work that charities do and we’re looking forward to seeing how this financial boost will change lives for the better.”

Edwin smiles for the camera. He is wearing dark glasses, leather gloves and a bandana.

How amazing is Edwin?

I was born with CN and for the most part consider myself to be lucky compared to many in our group.

Service to others has been a significant part of my life.

Recently, as Chief of Staff of my state’s second largest agency I was responsible for leading the development of a comprehensive employee wellness program. This program has become a model for other agencies like mine nationwide.

In addition, I lead the effort to develop a CQI process that saved state taxpayers millions of dollars.

Our agency’s employees’ commitment to helping others resulted in raising hundreds of thousands of dollars for Special Olympics athletes during my tenure.

One of my biggest joys is riding my Harley Davidson.

Our challenge is to not accept the limitations others set for us, and strive to be the best we can be!

Share your amazing nystagmus success story with us at [email protected]