Tag: nystagmus

Nystagmus Awareness Day – for snow men!

Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or skiing with us at the Snow Dome, Milton Keynes.

Jamie Fuller, from the Outspan Rebels VI ski team, is organising the first of two amazing Nystagmus Network Snow Camps. It takes place on Sunday 17 June.

There will be skiing and sledging for adults and children with nystagmus, their fully sighted parents, siblings and friends. Everyone is welcome to come along. Each session costs just £10 per person.

Charlotte Evans MBE will be there on the day along with Jamie and the Outspan Rebels, themselves. There might even be a few very special visitors!

It is sure to be a great day. So please join us if you can. To register your interest, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus in the garden

To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting!

Sue and her husband have been members of the charity since their daughter was diagnosed with nystagmus in 1991, during the first few weeks of her life. Sue has served as a trustee, volunteer parent adviser and is now an employee.

If you can’t make it to Sue’s garden, please consider making a donation to her Justgiving page instead. Thank you.

If, like Sue, you would like to open your garden for Nystagmus Awareness Day, you can download a free poster or flyer. For more details about this ‘nystagmus in the open‘ event or for advice on how to organise your event, please call Sue on the charity information and support line: 01427 718093.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

ECLO chatting with patient.

Do you know your ECLO?

If you or someone in your family has nystagmus, then make sure you meet your ECLO (Eye Clinic Liaison Officer). You can ask for them the next time you visit the clinic, or find their details on your local authority’s ‘local offer’ page, under visual impairment or sensory services. Alternatively you can search the RNIB’s Sightline Directory.

The role of the ECLO is to support anyone affected by visual impairment or sight loss, from the point of diagnosis onwards. They can offer you information and support and signpost you to organisations, like the Nystagmus Network, who can help you. They can also help you come to terms with your condition and make sure you have someone to talk to.

So if you’re a VIP (visually impaired person), your ECLO is also a VIP (very important person) to get to know.

Find out more about ECLOs.

rebecca presents at the Nystagmus Network Open Day

Nystagmus and Quality of Life

A research paper is republished this month into the quality of life of people living with nystagmus. Professor Irene Gottlob and Dr Rebecca McLean from the University of Leicester shared their findings in the British Journal of Ophthalmology. Their report followed an extensive research study, funded jointly by the Nystagmus Network and Fight for Sight. The purpose was to measure the adverse effects of living with nystagmus across a range of areas of everyday life, with a view to developing a Quality of Life tool. It was concluded that nystagmus does indeed affect every aspect of life.

Read the full report here.

Marsha de Cordova MP – our Open Day keynote speaker

We are delighted to announce that we shall be joined on Open Day this year by Shadow Minister for Disabilities, Marsha de Cordova.

Marsha has nystagmus and is severely sight impaired. She recently explained to BBC Radio 4’s Intouch programme how she manages her vision problem as part of her busy professional life.

The photograph is by Graeme Robertson for the Guardian.

Thursday is research news day on Facebook

Every Thursday on our Facebook page we publish the latest news on nystagmus research or publish details of new nystagmus trials that you can take part in.

We are currently supporting these trials:

  • The Southampton University Hospital team need to find people with albinism and nystagmus, aged over 60 so that Mr Jay Self and his colleagues can discover why people with albinism seem to be immune from AMD (Age-related Macular Degeneration).
  • The Cardiff University team are looking for children with congenital nystagmus aged from 6 months to 10 years, with our without Downs Syndrome, so that they can find out more about how vision develops in young children.
  • The Moorfields/UCL team, under Mr Vijay Taylor, are recruiting adults with congenital ideopathic nystagmus, between the ages of 18 and 50, to investigate the phenomenon known as ‘visual crowding’ associated with nystagmus.

Don’t miss your chance to take part in research and read the latest nystagmus-related news!

Every Wednesday is Nystagmus Awareness Day on Facebook

We started national and international Nystagmus Awareness Day, also known as Wobbly Wednesday, back in 2013. But every Wednesday is awareness day on our Facebook page.

This means you can talk about any aspect of nystagmus you choose and ask any questions you like. This is your forum to talk about everything to do with nystagmus.

We will, of course, be celebrating the actual Nystagmus Awareness Day later in the year. See today’s further blog post for exciting news about this year’s theme!

Nystagmus Awareness Day 2018

The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day.

Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.

In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.

To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.

Please watch our blog and social media posts for further news.

It’s Tuesday – that’s Nystagmus Networking day on Facebook!

We call our charity the Nystagmus Network, because it’s very important to us to help people affected by nystagmus to get together for mutual support. There is no better feeling than meeting someone else who has nystagmus themselves or has a child with nystagmus.

To help members of the nystagmus community get together, this year we have declared every Tuesday nystagmus networking day on our Facebook page.

Each week we nominate areas of the UK from our big alphabetical list and encourage people to leave comments, message each other and organise meet ups. Why not come over to our page and see who you could find in your area?

Could you do something extraordinary for nystagmus?

In 2018 we’re looking for people who want to do something amazing. We’ve got lots of opportunities lined up and we’re ready to give you masses of support to follow your dream. So whether it’s a mountain trek to Kilimanjaro you fancy, a London to Paris bike ride or something a bit nearer to home, we’ve got the bucket list adventure for you.

If personal challenges are what floats your boat, try this.

Or if sky dives are more your thing, click here.

To talk to us about how we can achieve your personal goal together and fundraise for the charity at the same time, please contact us here.