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Lights! Action! Wobbly Wednesday!

 

Blackpool tower (UK), Niagara Falls (USA/Canada) and the CN Tower in Toronto (Canada) are three landmarks lighting up on November 5th in recognition of Wobbly Wednesday – international nystagmus awareness day.

 

At least 1 in 1,000 people have nystagmus (around seven million worldwide) and awareness of the condition is growing fast since the first Wobbly Wednesday in November 2013. The new Facebook groups in India, Germany and Canada are just some of the signs that knowledge of nystagmus is increasing.

Wobbly Wednesday activities in the UK this year include bake sales, a lot of stuff with jelly and events in schools and hospitals from Guernsey to Scotland. Find out more at https://www.facebook.com/groups/WobblyWednesday/%20or http://www.nystagmusnet.org/cms/index.php/about-us/wobbly-wednesday/365-wobbly-wednesday-2014-november-5th.

 

Open Day Video online

 

See the fun we had at the UK Nystagmus Network 2014 Open Day on our video at http://youtu.be/oRtcgICylak. The Leicester event in June brought together 150 people from across the UK – and a few from abroad. It is the one day of the year when those with nystagmus are likely to be in the majority.

 

We’ve been holding Open Days since the 1980s (in London, Birmingham, Manchester, Nottingham and Bristol so far), but this is the first time we’ve videoed one. It features paralympian Sarah Caffrey, researchers from Leicester and Cardiff, members of the NN team and of course lots of you.

 

Our annual Open Days give you the opportunity to talk to researchers and doctors, learn from experts in education and benefits as well as meet adults with nystagmus and other families who have children with the condition. We will announce details of our 2015 Open Day here, on Facebook and Twitter.

 

Training day gets orthoptists’ CPD accreditation

 

BIOS, the British and Irish Orthoptic Society, has given Level 1 CPD (continuing professional development) accreditation for the Nystagmus Network’s clinical training on January 30th in Bristol. The course will equip delegates to offer patients with nystagmus the most up-to-date service in terms of diagnosis, treatment, information and support.

 

Details of the event are at http://www.nystagmusnet.org/cms/index.php/about-us/clinical-training-day and an online booking option is available at http://www.eventbrite.co.uk/e/paediatric-nystagmus-a-practical-training-day-tickets-10486931695.

 

First joint news release for Wobbly Wednesday

 

For the first time ever Nystagmus Network (NN) and our US colleagues the American Nystagmus Network (ANN) issue a joint news release to promote Wobbly Wednesday – Wednesday 5 November - a day dedicated to raising awareness of nystagmus.

 

Issued by both charities on the same day, “UK and US nystagmus charities unite for Wobbly Wednesday,” says that: “Supporters are planning to celebrate Wobbly Wednesday in many different ways but it is undoubtable the children who have wobbly eyes that will be the stars of the day”.

 

Chairman of NN in the UK Richard Wilson said: "The first Wobbly Wednesday was such a success that we just can't wait to do it all again.  And it is just great that our American friends have taken this idea to their hearts too so that Wobbly Wednesday is truly global."

 

ANN president John Cramer said: “The American Nystagmus Network is pleased to once again partner with the Nystagmus Network in another Wobbly Wednesday.  Last year, we were thrilled by the number of children that bravely went into their classrooms to explain to their classmates what it’s like to have Nystagmus.”

 

You can read the full news release online at: http://www.nystagmusnet.org/cms/index.php/about-us/mainsite-media/press-releases/382-uk-and-us-nystagmus-charities-unite-for-wobbly-wednesday

To find out more see our Wobbly Wednesday Website at http://www.nystagmusnet.org/cms/index.php/about-us/wobbly-wednesday/365-wobbly-wednesday-2014-november-5th, our dedicated Facebook page at https://www.facebook.com/events/565134980266184/ or contact us at  This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

Hospitals sign up for Wobbly Wednesday

 

Half a dozen hospitals including Addenbrookes, Oxford, Bournemouth, Darlington, Stoke Mandeville, Moorfields and Colchester are already up for raising awareness of nystagmus on November 5th. Staff in these hospitals and eye clinics will join hundreds of people around the UK – and elsewhere – spreading the wobbly word. Addenbrookes has even enrolled the support of Northwick, the bear with nystagmus.

 

Nystagmus is a lot more common than people realise. We plan to raise the profile of nystagmus so you can mention it without feeling shy or embarrassed. Wear a nystagmus wristband or pin-badge on the day and get people to ask you what nystagmus is. If you want to throw a few famous names into the conversation, mention Richard Osman (BBC TV), apl.de.ap (Black Eyed Peas), flautist Sir James Galway, singers Kenny Rogers and Roy Orbison and actors Frank Langella and Pruitt Taylor Vince. All have nystagmus.

 

Schools are taking part too, with several children plucking up the courage to tell their classmates about what it’s like to have nystagmus. Radio shows in Eastbourne and Reading have already scheduled features on nystagmus for Wobbly Wednesday Week.

 

Families in Bromley are holding a Wobbly Wednesday Spooktacular with Halloween disco, bbq and hog roast. Others have events planned in Cornwall and Colchester, Lincoln and Londonderry, Northumberland and Nottingham too – as well as the Isle of Man and Scotland. Beyond Britain, we’re once again linking up with the American Nystagmus Network and supporters in other countries.

 

To find out more see our Wobbly Wednesday Website at http://www.nystagmusnet.org/cms/index.php/about-us/wobbly-wednesday/365-wobbly-wednesday-2014-november-5th, our dedicated Facebook page at https://www.facebook.com/events/565134980266184/ or contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. .

 

Oldest known books on nystagmus available online

 

A French supporter of the Nystagmus Network has tracked down the earliest known publications about nystagmus. The two books -- one in German and the other in French – were published in 1857 and 1869 respectively and are available to read online.

 

The German book entitled “Der Nystagmus und dessen Heilung" (Nystagmus and its treatment) by Dr Ludwig Boehm is available at http://reader.digitale-sammlungen.de/de/fs1/object/display/bsb10390716_00005.html. The 170 page long book discusses the use of muscle exercises, surgery and glasses to treat nystagmus. It concludes with a number of case studies

 

The French book, “Etude sur le Nystagmus” (A study of nystagmus) was published 12 years later in 1869 by Dr A-E Gadaud in France. Gadaud writes that nystagmus is among the least studied eye diseases – something that has changed little in 150 years.

 

In his book (see http://gallica.bnf.fr/ark:/12148/bpt6k5470106q), Gadaud notes that some disagree with Boehm’s view that nystagmus was simply a problem of the eyes. We now know that nystagmus is much more complicated than that – as many of his contemporaries already suspected in the mid 19th century. Gadaud’s book also casts doubt on Boehm’s claims to have cured several cases of nystagmus.

More than 150 years later many unanswered questions remain about nystagmus. For a more up-to-date scientific and medical book on the condition see the “The Challenge of Nystagmus” available at http://www.nystagmusnet.org/cms/index.php/shop-home/books and on Amazon at http://www.amazon.co.uk/The-Challenge-Nystagmus-Proceedings-September/dp/0955894026/ref=sr_1_1?ie=UTF8&qid=1407941438&sr=8-1&keywords=challenge+of+nystagmus.

NN invites grant applications

 

Having just awarded a £15k research grant to Cardiff University, NN is offering a further £20k plus for research projects this year in three separate programmes.

 

To apply for our £10,000 grant – deadline end of August -- please email This email address is being protected from spambots. You need JavaScript enabled to view it. . Similarly email John for details of our small grant scheme -- a total of £5,000 available in sums of up to £1500.

 

The final application date for our joint £15k grant with Fight For Sight is August 27th. Download an application form at http://fightforsight.org.uk/funding-types/articles/small-grant-awards-schemes

 

Research into all aspects of nystagmus – prevention, cure, treatment and impact is a core NN aim alongside providing support and raising awareness.

 

Cardiff to use £15k NN grant to assess impact of nystagmus

 

Cardiff University’s Research Unit for Nystagmus (RUN) is to use a £15,000 grant from NN to develop a test to accurately measure the impact of nystagmus. The award is the first in a new annual scheme from the charity. NN is calling for applications for another research grant (£10k) to be announced later in the year

 

 

 

The Cardiff team has recently published evidence (http://abstracts.iovs.org/cgi/content/abstract/54/6/179) that visual acuity is an inappropriate measure of visual function in nystagmus. The test, designed by Dr Matt Dunn and director of RUN Professor Jonathan T. Erichsen, will allow for ‘time to see’ and the null zone to be taken into consideration when assessing the effects of nystagmus (involuntary eye movements).

 

 

 

Dr Dunn said: “Recent work from our lab suggests that visual acuity may not be a relevant measure when assessing changes in visual performance in people with nystagmus. We are therefore very grateful to Nystagmus Network for providing this funding which will enable us to investigate the nature of visual 'timing' in infantile nystagmus. This may provide a method for more accurately measuring visual experience and assessing the effectiveness of currently available as well as future treatments.”

 

 

 

NN honorary president Vivien Jones said: “The proposal will potentially have a significant impact on the research community by providing an important new tool to measure existing and new treatments. This will also provide benefit to those with nystagmus who clearly want to know whether existing or new treatments do lead to improvements in vision.”

 

 

NN has set aside over £40K for research funding in 2014. 

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.