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“Glad I’m not alone” – Wobbly Wednesday success (November 13, 2015)


“I’m glad I’m not alone” was how one seven year old responded after watching our “The way we see it” video, one of two released on Wobbly Wednesday, November 4th. His reaction was shared by thousands of others with nystagmus around the world who for the first time could see and hear others with the eye condition.


One adult said of the video, which features TV quiz show host Richard Osman among others, “Thanks for sharing this great video, helps us understand that people's experience of nystagmus may be individually different.” Another commented: “Wonderful, inspiring perspectives on what it's like living with nyatagmus; fantastic role models who promote positive messages about a rare and commonly misunderstood eye condition!! Great stuff!!”


Within 10 days of the release of the two videos, they had been viewed almost 20,000 times. They inspired at least one teenager to start planning for Wobbly Wednesday 2016 already. The other video – “Professional perspectives” – focuses on current research into nystagmus and the options for helping people now.


The aim of Wobbly Wednesday is to make the general public more aware of nystagmus, a condition which at 1 in 1,000 is more common than most people realise. This year’s activities included quizzes, dress-down days, cake sales, a sports day, sponsored walks, jelly throwing and publicity stands in hospital eye departments and universities.


The videos are available on Youtube at https://m.youtube.com/watch?v=Ey-UD5Vzu_Q and https://m.youtube.com/watch?v=n0Awdks9Eag.


TV’s Richard Osman talks about having nystagmus (Nov 4, 2015)


TV quiz show host, writer and producer Richard Osman talks about his experience of living with nystagmus in the Nystagmus Network’s new video “The Way We See It” at https://m.youtube.com/watch?v=Ey-UD5Vzu_Q. Also starring in the video are student Will Coidan, Harriet (a little girl with nystagmus) and her mum Rosie.


A second video -- Nystagmus Professional Perspectives at https://m.youtube.com/watch?v=n0Awdks9Eag -- features medical and research experts from the Universities of Leicester and Cardiff and Southampton General Hospital. It was filmed in Cardiff University’s School of Optometry and Vision Sciences.


Both videos were launched as part of Wobbly Wednesday 2015, our third annual awareness raising day. The videos were funded by the Nystagmus Network thanks to a generous donation by the Giles Warman Foundation. They were made by film director Kristina Venning.


New Orleans conference update (Focus 108)


The latest issue of our Focus newsletter (108) includes reports from the fourth International nystagmus research workshop and the American Nystagmus Network conference in New Orleans. Among other developments, delegates at the research event predicted that they will soon be able to diagnose nystagmus in infants faster and more accurately.


Record producer and singer with the Black Eyed Peas apl.de.ap joined ANN’s New Orleans conference for an evening. apl.de.ap has nystagmus himself and said he felt very much at home surrounded by others with the condition. Our next 2016 annual Open Day in the UK takes place in Reading on May 7.

Focus comes out right on time for Wobbly Wednesday (4th November), when once again supporters of NN are raising awareness in many different ways. Find out more about Wobbly Wednesday at http://www.nystagmusnet.org/cms/index.php/about-us/wobbly-wednesday. There’s a family feel to the fundraising feature, with a rambling dad, a masquerade ball organised by a mum and a cousin who took part in a Tough Mudder challenge. NN has 10 places available at Tough Mudder events next year, so contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. if you’re interested. 


For many people the best bits of Focus are the experiences of nystagmus. In this issue you can read about Sophie and George and guest editor and newly appointed Development Officer Sue Ricketts whose daughter has nystagmus. Finally, Northwick goes to the optometrist and is left wondering whether carrot cake is the cure!

We send four issues of Focus to all members of the Nystagmus Network every year. To find out about joining NN go to http://www.nystagmusnet.org/cms/index.php/join-online

Sheffield University to set up nystagmus research centre (Oct 19)


The Academic Unit of Ophthalmology and Orthoptics at the University of Sheffield is to set up an eye movement recording laboratory to focus on nystagmus research. The facility will be used to train future orthoptists, allow the Unit to undertake nystagmus research and help diagnose nystagmus patients in Sheffield.


Thanks to a generous gift from the EBM Charitable Trust, Nystagmus Network is donating £10,000 towards the new laboratory. The University of Sheffield and Health Education Yorkshire & Humber are also contributing £10,000 each to the project.


Sheffield is one of the few universities training orthoptists in the UK, so this investment will have a considerable impact on the profession’s understanding of nystagmus. Dr Helen Griffiths, Senior Lecturer in Orthoptics, University of Sheffield, said: “We plan to teach students and practicing Orthoptists how to use this equipment to measure and record nystagmus accurately and in detail. The aim is to enhance the investigation of nystagmus and encourage interest and consequently research of the condition so that we gain a greater understanding.”


Nystagmus Network is Europe’s leading funder of nystagmus research and in the last two years has supported projects at Moorfields Eye Hospital in London, Cardiff University and Southampton General Hospital, investigating the use of contact lenses with nystagmus, the slow to see phenomenon and genetics respectively.


Clinical pathway proposal


A proposal for a clinical pathway for congenital nystagmus is the centre-piece of a Wales Council of the Blind (WCB) publication. How patients with congenital nystagmus (also known as infantile nystagmus and early onset nystagmus) are treated can vary greatly from one hospital eye department to another.


This variation is due to several factors including differing levels of awareness of the impact of nystagmus among health professionals, varying degrees of experience as well as the use and availability of diagnostic equipment.


The clinical pathway proposal (see http://www.wcb-ccd.org.uk/downloads/roundup21_supplement.pdf) sets out ideas for a standardised approach which would benefit patients, staff and the NHS.


The WCB newsletter supplement dedicated to nystagmus also has articles about nystagmus surgery, the role of optometrists (opticians), personal experiences of nystagmus, acquired nystagmus, the impact of nystagmus on quality of life and current research.


The Nystagmus Network is very grateful to the Wales Council of the Blind (http://www.wcb-ccd.org.uk/index2.php) for publishing a supplement on nystagmus.


Walking for Wobbly Wednesday

NN is encouraging supporters to organise a Wobbly Wednesday walkaround on or around Wednesday 4 November to celebrate our annual awareness day.


A Wobbly Wednesday walkaround works on the principle that ten people walking one mile can raise more awareness than one person walking ten miles.  The idea which is new for this year’s Wobbly Wednesday, is easy to organise and needs no special equipment.  All you need is a space big enough to walk around.  NN is suggesting that Wobbly Wednesday walkarounds take place between Saturday 31st October and Friday 6th November to maximise awareness.


Anyone can take part in a Wobbly Wednesday walkaround: at school walk around the playground, at work walk around the carpark, in town walk around the park or in the country walk around the field.  A wheely walkaround might be an option for mums with pushchairs, people in wheelchairs or cyclists and skaters.  For an extra wobbly walkaround add some jelly and ice cream at the end.


To take part simply email This email address is being protected from spambots. You need JavaScript enabled to view it. to register your Wobbly Wednesday walkaround. 


Follow this link to find out more Wobbly Wednesday http://www.nystagmusnet.org/cms/index.php/about-us/wobbly-wednesday and  on Facebook https://www.facebook.com/groups/WobblyWednesday/,


NN and Fight for Sight offer £15k research grant (July 2015)


The Nystagmus Network and Fight for Sight charities have teamed up for the fourth year in succession to invite applications for a £15,000 research grant. This Small Grant Awards Scheme is open to applicants attached to a UK academic or medical institution doing clinical research in the field of nystagmus.


The closing date is August 19th, 2015. For full details and an application form see http://fightforsight.org.uk/apply-for-funding.


Previous projects jointly funded by NN and Fight for Sight are:

2012: contact lenses and nystagmus (Moorfields Eye Hospital, London)

2013: oscillopsia and nystagmus (Cardiff University School of Optometry and Vision Science

2014: nystagmus and balance (Leicester University).

Blackpool Tower joins Wobbly Wednesday celebration

Once again Blackpool Tower will be lit up in blue on Wednesday 4 November in celebration of Wobbly Wednesday.  That is the day when Nystagmus Network is leading a campaign to raise awareness of the eye condition nystagmus.


Read the full news release http://www.nystagmusnet.org/cms/index.php/about-us/mainsite-media/press-releases/441-blackpool-tower-tops-wobbly-wednesday-bill

Southampton seeks volunteers with albinism (July 2015)


The University of Southampton is looking for people with albinism (including teenagers) or the parents of children with albinism to help develop a research project. The aim of the study is to establish whether Levodopa replacement in albinism can optimise retinal development in children and improve visual function.


To start with, research ophthalmologist Helena Lee would like to meet informally to ask your opinions. If you agree to take part, there will be other meetings as the project progresses. All meetings will take place in Southampton, so it would help if you live within easy travelling distance. Travel expenses will be paid.


For more details email Helena at This email address is being protected from spambots. You need JavaScript enabled to view it.


Teachers’ tips and career advice in June newsletter


Our Newcastle Open Day and new money for research share the cover of the summer 2015 issue of our Focus newsletter (number 107). The centre-fold is given over to photos of the 160 or so delegates at our Open Day. The news pages contain research updates from Cardiff, Southampton and Moorfields Eye Hospital in London and information about a major donation to NN.


In the experiences of nystagmus section, Jenny gives a second account of living with acquired nystagmus. Diego from Columbia has a message of encouragement after achieving a degree and getting married: “Do not give up on your dreams because of your visual limitations.” A second case study also comes from South America: Luiz lives in Brazil, has nystagmus and a good job in the legal world.


Elsewhere in Focus, find out what was top of the list when NN’s John Sanders asked QTVI’s (qualified teachers of the visually impaired) about tips for helping students with nystagmus. The fundraising feature has an eclectic mix from Christmas trees to American football, we thank them all. Last but not least Northwick, our favourite bear, does some very helpful homework.


We send four issues of Focus to NN members every year. To join online go to http://www.nystagmusnet.org/cms/index.php/join-online  


Nystagmus Network launches Wobbly Wednesday 2015

Wobbly Wednesday 4th November 2015 is the day dedicated to raising awareness of the eye condition nystagmus.

Wobbly Wednesday is led by the Nystagmus Network in the UK. Supporters organise events at schools, hospitals, workplaces and in their communities.

Get involved:

Share this notice and attached poster with your contacts.

Contact Nystagmus Network for your supporter pack, Tel, 029 2045 4242 or 0845 634 2630, email,  This email address is being protected from spambots. You need JavaScript enabled to view it.

Connect with Wobbly Wednesday via social media,

Facebook https://www.facebook.com/groups/WobblyWednesday/ and Twitter #WobblyWednesday

Find out more about Nystagmus Network online http://www.nystagmusnet.org