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Football and picnic in the park

Several young people with nystagmus brought their families along for a picnic and a game of football in a park in Leicester at the end of July. Everyone had a great time and – as you can see from the photo – wobbly eyes don’t necessarily stop you kicking a ball around.

If you want to meet others with nystagmus, take part in or organise a social event go to our Facebook page https://www.facebook.com/pages/Nystagmus-Network/216838805015328

Hindi information sheet added

 

Supporters in India have translated NN’s basic information sheet on nystagmus into Hindi. The Hindi fact sheet is available as a free PDF at http://www.nystagmusnet.org/cms/index.php/nystagmus along with other languages including Telugu, French, Spanish, Italian and an updated German information sheet.

 

 

 

India has a new but already thriving nystagmus facebook page at https://www.facebook.com/groups/257947687740850/. Discussion topics include the shortcomings of visual acuity as a measure for nystagmus, what ophthalmologists should tell people when giving a diagnosis of nystagmus and how to improve education support for children in school.

 

Smiley faces say it all

 

Our Leicester Open Day was a lot of fun, as a glance at the photos in our July newsletter shows. The fun continues in Disneyland and advice on how to get the best from this attraction if you have a child with nystagmus. Focus 103 has hard stuff too. Ironman Neil has never let nystagmus stop him – or slow him down when it comes to marathons, cycling and triathlons. Jo writes about acquired nystagmus and how there’s no need to despair. Parents Martin and Paula write about their son Oliver’s experience of nystagmus and their own journey through the diagnosis system. And the latest adventure of Frank and Northwick the bear uncovers a little known fact about nystagmus. Focus is sent to all members of the Nystagmus Network and is available in print, pdf and on audio CD.

 

Health Visitors add nystagmus advice

 

The UK Institute of Health Visiting (IHV) has added a nystagmus information sheet to its website at http://www.ihv.org.uk/uploads/32%20GPP_Nystagmus_V4.pdf. Health visitors potentially have an important role to play in identifying early onset nystagmus which often only becomes apparent at around 6-8 weeks of age.

The information sheet describes nystagmus as “complex because it doesn’t simply affect distance vision but also response times, field of vision, depth perception and ability to scan. The condition can also manifest itself in different ways throughout the day. As a condition it is similar to Cortical Visual Impairment (CVI).”

 

The IHV information sheet was written in cooperation with the UK Nystagmus Network.

 

India starts nystagmus facebook page

 

With the help of the UK Nystagmus Network and others, several people in India have got together to set up their own facebook page at https://www.facebook.com/groups/257947687740850/. The launch follows encouragement from NN after the UK charity noticed that people in India are the fourth biggest group of visitors to its own facebook page.

 

 

 

NN development manager John Sanders said: “It's great to see a nystagmus Facebook page for India. The Nystagmus Network has existed in the UK for over 30 years, so we know the value of helping each other. We also do a lot to raise awareness and encourage and fund research into nystagmus. Hopefully you will all be pleasantly surprised at how much you can achieve by working together in India.”

 

The USA and Australia – the second and third biggest sources of visitors to NN UK’s facebook page -- already have their own national facebook pages. The US also has its own non-profit organisation helping people with nystagmus – the American Nystagmus Network (ANN).

 

Speaker Sarah inspires

 

Paralympian Sarah Caffrey inspired the 150 delegates at the NN Open Day on June 28th with her account of succeeding in sport and work despite having nystagmus and achromatopsia. Her talk was particularly helpful for parents of children with nystagmus who are uncertain of what the future holds. Several parents described Sarah’s talk as brilliant and inspirational.

 

 

 

Sarah was the keynote speaker at this year’s Open Day, which took place in Leicester, a leading research centre for nystagmus. Sarah spoke frankly about the traumas and challenges she sometimes experienced at school, university and in her working life because of her visual impairment. But she balanced this with stories of her successes and the very positive support she receives from friends, family, colleagues and fellow athletes.

 

 

 

Sarah rowed for Ireland in the 2012 paralympics and has won silver and bronze medals in international events. Yet at school she dreaded PE days, mainly because no-one understood how hard it is for people with nystagmus to play ball games. Luckily at the age of 14 Sarah discovered rowing and has never looked back since. She scuba dives, cycles, sails, skis, surfs and white water rafts among other activities and adventures.

 

 

 

Sarah also has a successful career as a qualified teacher of the visually impaired (QTVI). She says that being visually impaired herself is an advantage as it gives her greater awareness, understanding and empathy with students and their parents.

 

 

 

However, Sarah admits that life with a visual impairment is not always plain sailing. It wasn’t until she was in her 30s that she fully accepted her vision and its limitations. And like many with nystagmus, she says that getting people to understand what she can and can’t see remains a challenge. “Some people treat you as totally blind, while others think you’re pretending,” she says.

 

Bonding in Bromley

 

Around 30 parents, teachers and teaching assistants met in Bromley on June 11th to learn and talk about nystagmus with NN development manager John Sanders. One of the biggest challenges they identified for children was getting across the message that nystagmus does affect sight beyond simply reducing distance vision. That’s because many children with nystagmus appear to cope so well, when in fact they are bluffing about what they can (or cannot) see and trying desperately not to draw attention to themselves.

 

Technology like interactive smart-boards, tablet computers and Kindles are a great help to children with nystagmus. But all agreed that technology doesn’t solve everything. Parents and teachers noted, for instance, the social challenges children with nystagmus face such as finding their friends in the playground, failing to see visual cues and the feeling of sometimes being left out.

 

One frustration that many parents (and qualified teachers of the visually impaired or QTVIs) have is the lack of understanding that glasses don’t fix nystagmus. They also highlighted the difficulty people with nystagmus have in busy, fast-moving environments and with seeing fast movement in general.

 

If you would like a talk or training session about nystagmus, please email This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

Send us your questions

At our annual Open day every year, we invite you to put questions about nystagmus to experts. Your questions can be about any aspect of nystagmus – medical, scientific, education, work, social, etc. Even if you can’t make it to Leicester on June 28th, you can email us your questions and we will get answers to as many as we can.

For more information about this year’s Nystagmus Network Open Day see https://www.eventbrite.co.uk/e/nystagmus-network-open-day-2014-tickets-10371729121

To see examples of the questions we would like answered, go to http://www.nystagmusnet.org/cms/index.php/research

 

Answers on Facebook

 

Questions about balance, school admissions and ID cards for teenagers were among the topics discussed on our Facebook page during May. We also put out a call for volunteers to take part in nystagmus research in the USA.

 

You can find the Nystagmus Network on Facebook at https://www.facebook.com/pages/Nystagmus-Network/216838805015328. Join thousands of others, contribute to our understanding of nystagmus and take part in the debate about what it’s like to have wobbly eyes. We don’t have all the answers yet, so your input is valuable and could help others.

 

Walk for research

 

NN is looking for 30 people to each raise £250 for nystagmus research in a sponsored city centre night walk in September. This is the third year in a row we’ve joined in the Carrots NightWalk. The £7,500 combined sponsorship will go towards a £15,000 nystagmus research grant.

 

Last year’s grant went to Cardiff University where researchers are investigating the phenomenon of oscillopsia in nystagmus. This is the sensation – particularly among people with acquired nystagmus – that the world is moving. The 2012 award went to Moorfields Eye Hospital in London where they are looking at the use of contact lenses among people with nystagmus.

 

The NightWalk takes place on Friday, September 19. You can choose between London and Birmingham. To find out more or for an application form, please email NN’s Kerry Pleasant at This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

NN opens 2014 small grants scheme

 

The Nystagmus Network invites applications for small research grants for up to £1500 each by July 31. This is in addition to our £15,000 (now closed to applications) and £10,000 grant awards this year. These small grants are designed to help with items for which it would be difficult to obtain funding from other sources, such as patient travel costs, training courses, attending conferences, consumables in a research project, etc. We welcome new research ideas, but are also looking for answers to questions such as:

What is the impact of the null zone/point on the field of vision? (Do existing field tests measure this impact? If not, can you develop a test that does?)

How do normal age-related changes in vision (presbyopia and needing more light) affect the functional vision of people with nystagmus? To apply or for further information about NN grant funding email

What is the evidence that visual stimulation of infants with infantile nystagmus improves their vision?

Patients diagnosed with acquired nystagmus often say they have been abandoned by health professionals. What should be done to improve their experience during and after diagnosis?

To apply or for further information about NN grant funding email This email address is being protected from spambots. You need JavaScript enabled to view it. .