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Focus 105 newsletter: Dating and Mrs Woggly

 

Focus 105 starts by reflecting what a busy autumn it was.  Wobbly Wednesday, Carrots NightWalk and two new research grants. Coming up in 2015: previews of our clinical training day and confirmation of a new month and city for Open Day. Read about what happened when a group of families with children who have nystagmus spent a day at the zoo. Jenny Rose talks about having acquired nystagmus or, as Jenny calls it, Mrs Woggly.  Jenny has a message to all with acquired nystagmus: “keep going and have purpose for each day -- despite your Mrs Woggly.” 

 

In fundraising news - Pounding the pavements and parting present: NN has places for the BUPA London 10K and David Ebert encourages work-mates to support NN. Actor Gerard McDermott looks at dating for people with nystagmus. And finally Northwick gets in a flap about Christmas or more importantly the chocolates on the tree.

Our Focus newsletter is one of the benefits of NN membership. Four times a year we send members a print, electronic or audio copy of Focus.

TV presenter Richard Osman talks about nystagmus

 

Richard Osman, co-presenter and creator of quiz show Pointless, spoke at length this week on BBC Radio 4’s In Touch about living with nystagmus. He explained how glasses do not help – although he wears them to correct short-sightedness – and that as a child with nystagmus “you don’t really know any different.”

 

On a positive note, Osman believes that his inability to see detail may have contributed to his successful career in creating and producing TV shows. “With nystagmus you have to think differently because you can’t see detail. I can live inside my head very easily and I can see things abstractly very easily -- which I think some people don’t because they can’t see the wood for the trees.”

You can listen to the full 20 minute interview at http://www.bbc.co.uk/programmes/b04v3840 or download it as a podcast until mid January.

 

Updated teacher pack now available free

 

NN’s updated information for teachers is now available free of charge by email. Simply email us at This email address is being protected from spambots. You need JavaScript enabled to view it. and ask for a copy. This 40 page pack explains how nystagmus can affect students in education settings and what teachers (and other school staff) can do to help. Although written for the UK, much of the advice in the pack applies to other countries too.

 

 

 

Nystagmus is the most common form of serious visual impairment among school age children. Even where other conditions are present, understanding and addressing the particular problems poses by nystagmus is still important. That is where the information in this pack can help children access the curriculum and – just as importantly – enjoy their school days.

 

 

 

You can find other education resources on this website at http://www.nystagmusnet.org/cms/index.php/resources/education-resources.

 

Send e-Christmas cards and support NN

 

You can now send electronic Christmas cards online and make a donation to support Nystagmus Network in the process. For a minimum of £10 you can send unlimited Christmas and other e-cards (birthdays, Valentines, etc) for a year. The cards include NN's name and logo. You can choose from the images offered or upload your own.

 

 

 

NN will get at least 80 percent of your subscription, more for higher subscriptions. Please remember to include gift aid. Go to our page http://www.charitecards.com/nastagmusnet and follow the steps to start sending e-cards.

 

Balance project wins joint NN/Fight for Sight funding

 

Leicester University has won this year’s joint NN/Fight for Sight Carrots NightWalk funding to investigate how nystagmus affects balance. NN’s contribution to the £10,000 project was raised by supporters taking part in sponsored nightwalks in London and Birmingham in September.

Dr Frank Proudlock, Senior Lecturer in the Ophthalmology Group at the University of Leicester and Professor Irene Gottlob, Consultant Ophthalmologist at Leicester Royal Infirmary will use a technique known as dynamic posturography. Dr Proudlock said: “Our aim is that this research will help us to identify, firstly, the patients that are at risk of having problems with balance, and secondly, the situations where they may have problems with balance.”

NN President Vivien Jones said: “When we talk about sight problems, people generally think mainly in terms of poor distance vision. Nystagmus is much more complex than that. It can affect the time needed to see things, the field of vision and, as this project shows, balance. But all these issues are poorly understood, so we are very pleased that Dr Proudlock is looking at answering some fundamental questions about nystagmus and balance.”

 

Numbers harder with nystagmus – research

 

Research by Leicester University shows that people with nystagmus find it more difficult to read numbers than letter and words. Speaking to an audience at Cardiff University’s School of Optometry, Leicester based researcher Dr Frank Proudlock said: “Reading numbers is a real problem for people with nystagmus. They do quite well with reading text, but really struggle with numbers.”

 

In a talk about albinism and nystagmus, Dr Proudlock also emphasised the value of hand-held OCT (Ocular Coherence Tomography) equipment for diagnosing both albinism and other causes of nystagmus in very young infants. Using OCT to study the development of the eye at such an early age holds out the hope of one day being able to intervene and reduce the impact of nystagmus, he added. “Hand-held OCT is a fantastic technique for infants with nystagmus. It can be used with premature babies and even in the operating theatre.”

 

Leicester is using eye movement recording equipment (eye trackers) as well as OCT for diagnosing nystagmus and predicting how the condition will affect infants when they are older. Although at an early stage, this work is already enabling ophthalmologists in Leicester to provide families with much more comprehensive information than most other hospitals in the UK or elsewhere.

 

However, the research in Leicester underlines how many unanswered questions remain about nystagmus. For instance, although researchers know the genes associated with albinism, “we still don’t know how they are linked to abnormalities in the visual pathway,” said Dr Proudlock.

 

The UK Nystagmus Network is funding a project in Leicester looking at the impact of nystagmus on balance. NN has funded other research in Leicester, including part funding the purchase of its hand-held OCT.

 

£10k for new “real world” nystagmus test

 

The Nystagmus Network has awarded a £10,000 “Wobbly Wednesday” research grant to Southampton University Hospital to develop a new test of what infants with nystagmus really see. The test will enable doctors to predict how a baby’s vision is likely to develop and therefore give parents better information about management and possible treatment.

Jay Self, Consultant Ophthalmologist, Southampton University Hospital, said: “I am delighted and very grateful to the NN for awarding this grant. It will help us answer one of the major questions about nystagmus: ‘Can we develop real-world tests of ‘vision’ for people with nystagmus that are better than a simple letter chart? By quantifying real-life visual problems for the first time, I believe we will show that us doctors routinely underestimate the visual problems faced by people with nystagmus. It will also help us prepare for clinical trials in the future.”

 

The £10,000 grant is part of NN’s £30,000 plus research funding programme for 2014. It is the first “Wobbly Wednesday” grant – an award funded by money raised in the UK from activities around the charity’s annual awareness raising day of the same name. This year Wobbly Wednesday fell on November 5th and involved people and nystagmus support groups in the UK, USA, Canada, Germany, India and South Africa.

 

Since 2012, NN has funded research in universities and hospitals in Cardiff, Leicester, London and Plymouth as well as Southampton. In 2013, the charity also funded its third international research workshop. NN will shortly invite applications for its 2015 grants programme and is holding its first clinical training day on January 30th.

 

Awareness day inspires thousands

 

Wobbly Wednesday, the second international nystagmus awareness day, inspired tens of thousands of people across the world, but also highlighted the challenges of this complex eye condition. Rhys in Australia tweeted “I love the term Wobbly, Some days are wobblier than others. Thank you for the affirmation of Wobbliness. I feel empowered.”  

 

In the US, Apl.de.Ap, who has nystagmus and is a member of the band Black Eyes Peas, contributed to the flood of messages about Wobbly Wednesday on Twitter and elsewhere. The mother of an 11 year old in New York praised her son for making an announcement at school. “This bold confidence was unheard of in my brother's generation, much less my grandfather’s (who was made to wear a "dunce" cap). I am nervous and proud at how far we have come!”

 

In the UK, three year old George was one of many children who found the courage to tell classmates about his wobbly eyes -- then they all got to share some wobbly jelly. Jelly featured elsewhere too. Teacher Dan let kids in his school throw jelly at him to raise funds for the Nystagmus Network. For adults, Caroline mixed jelly and vodka – also to raise funds and awareness.

 

Sean wrote on Facebook: “24 years of my life I live with this eye condition. I've been bullied from my elementary days till my high school days and it’s really difficult for me to work properly. But still it’s not a hindrance for me to be loved and have a family.” In similar vein, Anna wrote: "I'm a professional cameraman & race bikes for fun. Don't let #nystagmus cramp your dreams.”

Determination will overcome many challenges, but not all and it’s important to remember that nystagmus affects people to different degrees. Caitlin told of how she can’t play tennis – the ball moves too fast and people with nystagmus need more time to see. Mike emphasised how nystagmus can vary throughout the day with a Tweet that “tiredness today means that even with my monocular I can see several hundred yards less than usual.”

 

Our patron, footballer Steven Reid, talked to his local radio station about his son’s nystagmus. NN development manager John Sanders was interviewed for two radio shows, while in north Wales Tracey gave what is probably the first ever radio interview about nystagmus in Welsh.

 

Hospitals and eye health professionals spread the word too. Liverpool Orthoptics Society made and sold cakes like eyeballs to raise awareness in the city centre. Orthoptists in Bournemouth, Oxford and many other hospitals put up fabulous displays and notice-boards to highlight nystagmus to patients and colleagues alike.

 

In the UK, many families took advantage of Wobbly Wednesday falling on Bonfire Night to hold fireworks parties to spread the wobbly word. Around the world, illuminating landmarks such as Niagara Falls, Blackpool Tower and the CN Tower in Toronto put nystagmus in the lime-light on a slightly bigger scale.

 

The impact of all this activity was colossal. In the UK our social media reach increased by over 200 per cent. Website hits approached 1,000. And India joined in the activity for the first time too, with an article about nystagmus in a newspaper in Goa and a letter to the Indian Prime Minister.

 

Whatever you did, thank you from the Nystagmus Network to everyone who took part. We’ll do it again next year, only bigger and better. We’ll leave the final word to a grandfather who tweeted: “if you don't know what #WobblyWednesday is my grandson could tell you, he has the condition.”

 

 

 

 

 

 

 

 

 

 

 

Today is Wobbly Wednesday!

 

Wobbly Wednesday is international nystagmus awareness day. Across the world, children are telling their classmates what it’s like to have wobbly eyes. Our patron footballer Steven Reid, development manager John Sanders and many other are talking about nystagmus on the radio, in the press and on Twitter.

 

The aim is simple. Nystagmus is the most common serious visual impairment in children, but few have heard of it and little is known about the condition. So, the purpose of Wobbly Wednesday is to get across three simple messages:

 

 

  1.  Nystagmus is more common than you think – at least 1 in 1,000 people have it – yet there is little in the way of treatment.
  2.  Nystagmus affects much moiré than distance vision – so don’t make decisions about people with nystagmus on visual acuity tests alone.
  3.  Knowing how nystagmus affects you and that you’re not alone boosts confidence and helps people live with the condition

 

During Wobbly Wednesday, hospital eye departments are explaining what nystagmus is and how it affects people. Schools are holding events to highlight the impact of nystagmus and what everyone can do to help a student with the condition. Firework parties, cake sales, a sponsored silence and countless other imaginative and fun events are happening throughout the UK. And people are joining us in India, South Africa, the UK, the USA, Canada, Spain and elsewhere.

 

Blackpool Tower, Niagara Falls and the CN Tower in Toronto are all lighting up in honour of Wobbly Wednesday. Find out more at https://www.facebook.com/NystagmusNetwork or by emailing This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Wobbly Wednesday gets on air

 

 

 

Listen to seven year old Thomas Geering and mum Kathy talking about nystagmus on Eastbourne’s DGH Radio at https://soundcloud.com/radiodgh/john-sanderskathy-geeringthomas-geering-nystagmus.

Thomas and NN’s John Sanders explain what it’s like to have nystagmus and the importance of raising awareness of the condition through Wobbly Wednesday on November 5th.

See the Wobbly Wednesday Facebook page https://www.facebook.com/events/565134980266184/ or email This email address is being protected from spambots. You need JavaScript enabled to view it. for more information.

 

Text WWNN14 to 70070 on Wobbly Wednesday

 

Please support our work by texting WWNN14 to 70070 and the amount you wish to donate (eg £2 £5 £10) on or around Wobbly Wednesday. Funds raised enable us to support people with nystagmus, raise awareness and fund more research. We will be announcing the award of a £10,000 Wobbly Wednesday research grant very soon.