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.

BBC charity appeal raises £8,000

Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by several individuals saying that they were totally unaware of the condition previously or that Richard himself lived with nystagmus. We have also enjoyed unprecedented social media engagement. With transmission following closely after Nystagmus Awareness Day on 20 June, the appeal raised awareness of the condition to new heights.

In 2020, when most fundraising has ceased and people with nystagmus have been struggling with homeschooling, social distancing, shopping, lack of hospital appointments and isolation, the appeal has been a lifeline to the charity and the nystagmus community in terms of generating donations.

The total raised has reached almost £8,000 to help the charity extend and develop its support and information services. This means that, as eye clinics and high street opticians begin to reopen, patients and their families will have access to information about nystagmus. Clinic staff will be aware of their needs, thanks to training the charity is now able to provide. In September, when children return to school, parents and school staff will enjoy the benefit of accurate, up to date information about education support to ensure that all young people with nystagmus attain their academic potential.

We are indebted to our wonderful presenter, Richard, for kindly agreeing to voice our appeal and share his own reflections on living with nystagmus. We often tell young children that, with the right support, they can achieve anything, despite their disability. They can even become a famous TV presenter if they work very, very hard. Thank you, Richard, for the inspiration and thank you to everyone who responded to the appeal.

The Nystagmus Network appeal page on the BBC Radio 4 website, showig a picture of Richard Osman and details of the appeal.

Missed the appeal? Listen again!

If you missed Richard Osman presenting the Nystagmus Network charity appeal on BBC Radio 4 at 07.54 this morning you can listen again now.

Listen again here

Make a donation to the appeal here

Huge thanks to Richard and to everyone for donating to the appeal. Your generosity will ensure that the charity can continue to support the nystagmus community.

Richard Osman to voice Radio 4 appeal

The Nystagmus Network is delighted to announce that it has been granted a BBC Radio 4 charity appeal.

The appeal will be presented by well known TV presenter, broadcaster and author, Richard Osman on Sunday 5 July.

Richard has nystagmus himself and says it is his “absolute pleasure” to be able to support the charity in this way. Although he enjoys a successful career, he explains that at school “I had to listen an awful lot”. He famously cannot use an auto-cue when presenting on TV and must commit everything to memory.

Hear Richard talk about the Nystagmus Network here

The charity is particularly thrilled to have Richard’s support with the appeal as he is something of a role model to children and young people who have nystagmus. They see him on TV and know that they too can achieve their ambitions if they work hard and get the support they need.

Richard’s success and high profile are also a source of great comfort to the many parents who worry what the future may hold for their visually impaired children.

The charity’s Information and Development Manager, Sue Ricketts says: “We are so pleased to have been awarded this opportunity to have a Radio 4 appeal. Many listeners will hear about nystagmus for the very first time from someone who lives with the condition himself. What better way to raise awareness?”

Every pound donated to the appeal will help the Nystagmus Network continue to support the children, adults and families living with nystagmus and provide them with the information they need to thrive.

The appeal will be broadcast on Sunday 5 July at 07.54 and at 21.25 and again on Thursday 9 July at 15.27 on BBC Radio 4

DAB BBC Radio 4
FM 92 – 95 FM, 103-105 FM
LW 198 Long Wave.

Picture of Richard Osman courtesy of Penguin Books

Please click here to donate to the appeal – thank you

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.

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.

Website │Twitter │Facebook │Instagram

Join the Nystagmus Network for The 2.6 Challenge

Calling all nystagmus heroes …

You, your family and friends are warmly invited to take part in The 2.6 Challenge from Sunday 26 April to help to save the UK’s charities.

The Covid-19 pandemic has had a devastating effect on charities, with the cancellation of 1,000s of events and the loss of £billions in fundraising income.

In response, the organisers of the biggest mass-participation sports events across the country have come together to create a new campaign to raise vital funds to help to save the UK’s charities, including the Nystagmus Network.

The 2.6 Challenge will launch on Sunday 26 April – the original date of the 40th London Marathon, the world’s biggest one-day annual fundraising event.

We’re asking you to take part in an activity of your choice based around the numbers 2.6 or 26 and fundraise or donate to support the Nystagmus Network with twopointsixchallenge.co.uk

People of all ages are taking on The 2.6 Challenge with all kinds of activities – from walking, running or cycling 2.6 miles, juggling for 2.6 minutes, to holding online workouts with 26 friends.

The ideas and options are endless!

Just remember, please, that you must follow Government guidelines on exercise and social distancing.

Most people are taking part from Sunday 26 April, but you can do your activity whenever suits you best.

There are just five simple steps :

1. Dream up your 2.6 challenge – if you need help there are lots of ideas here

2. Head to twopointsixchallenge.co.uk to donate £26 – or the amount of your choice – to the Nystagmus Network or to set up a fundraising page

3. Ask all your friends and family to sponsor you and challenge them to do their own 2.6 Challenge

4. Complete your challenge

5. Share a photo or video of your challenge on social media using #TwoPointSixChallenge

We hope you’ll join the nation in The 2.6 Challenge to support the Nystagmus Network and help to save the UK’s charities.

THANK YOU for your support

Visit The 2.6 Challenge website here

Nystagmus Awareness Day 2020

We may all be staying at home, but we can still mark national and international Nystagmus Awareness Day. Here are just some of the ways you can get involved.

How amazing are you?

In the run up to Nystagmus Awareness Day 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].

Our wobbly photography competition

We know that lots of people who have nystagmus are also keen photographers. 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.

Details coming soon

Our wobbly Quiz

The Nystagmus Network is running a Virtual Quiz Night every Saturday at 7pm throughout lockdown. On Nystagmus Awareness Day, 20 June, the quiz promises to be our biggest and best yet. There are cash prizes for 1st, 2nd and 3rd places. So what are you waiting for? Get everyone signed up now!

Sign up for the quiz here

Nystagmus is …

Our fabulous new publication, Nystagmus is …, inspired by the wonderful Roger, will be launched on Nystagmus Awareness Day 2020. The booklet 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 people can read what it’s really like to have nystagmus by the people who really know.

Nystagmus is … will be available FREE from our online shop on 20 June 2020, but you can pre-order your copy NOW. Simply email us at [email protected].

Home school for Nystagmus Awareness Day

We have loads of teaching and learning materials available to help mark Nystagmus Awareness Day. There are posters to colour, bunting to make, a PowerPoint presentation, a lesson plan and our booklet especially for children ‘Wobbly Eyes”.

Find your free to download materials here

Lockdown fundraisers

Lockdown doesn’t stop us! Don’t let it stop you! Especially not on Nystagmus Awareness Day!

Find out about our lockdown fundraisers here

Why do we need Nystagmus Awareness Day?

Here at the Nystagmus Network we raise awareness of the condition every single day of the year, because we 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 and everyone affected will enjoy a better quality of life.

Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that we are here and our voices need to be heard. Every time you take part in Nystagmus Awareness Day or tell someone what you’re doing and why, that’s one more person who understands what nystagmus is.

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

Please take part in Nystagmus Awareness Day 2020

Thank you for your support

Sara on the NHS front line

Sara works hard part time as Information Support Officer with the Nystagmus Network, but did you know she also works on the NHS front line? She’s even working today on her son’s birthday.

Her role is with a busy doctors’ practice. Sara says:

“I manage a team of 10 receptionists and support all the clinicians including GPs, nurses and pharmacists. My main responsibility during Covid-19 is first and foremost keeping our patients and staff safe.

‘We’ve had several members of staff needing to self isolate, so it’s a case of putting plans into place for the worst case scenario. To comply with social distancing we’ve had to rearrange the patient waiting area completely. Then there’s the difficulty of keeping staff 2 metres apart throughout the surgery.

‘Fortunately, our patients can message us by email, so saving them the need to come into the surgery. They can describe their symptoms or send us photos of something like a rash they may need help with. We can email sick notes and other documents. Our GPs are also conducting consultations by video call to protect patients and surgery staff.

‘Everyone at the surgery, including my reception team, is working very hard during a time when we’re under incredible pressure. We’re having to amend and update policies and procedures daily as the situation continues to change, but we’re an amazing team and I’m fortunate to be supported by a fantastic NHS work family!”

Well done, Sara. We know how much your GPs value you, especially as you’re their in-house nystagmus ‘expert’, too!

HAPPY BIRTHDAY, CHARLIE! Mum will be home in time for tea!