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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

Applications invited for nystagmus research funding

Applications invited for nystagmus research funding

The Nystagmus Network is inviting applications for two new research grants, one of £10,000 and one of £1,500, to improve the lives of people affected by nystagmus. The charity will consider proposals from hospital and university based researchers and clinicians.  NN announced the grants at its Newcastle Open Day on May 9th.


The new money is available thanks largely to a substantial donation from the EBM Charitable Trust.   The awards also recognise the achievements of supporters who have been fundraising during the springtime running season.  In 2014 NN funded research projects at Southampton, Leicester and Cardiff universities.


Vivien Jones, President, Nystagmus Network, said:  “We are truly grateful to the EBM Charitable Trust and our supporters who fundraise for us.  These awards will enable nystagmus researchers to continue their work to find successful treatments of the eye condition.”


News about the latest research was an important part of the Nystagmus Network Open Day.  Delegates heard from Ophthalmologist Maria Theodorou about her work at Moorfields Eye Hospital in London, where a project partly funded by NN is looking into the use of contact lenses by nystagmus patients.  Experts from Leicester and Southampton were also on hand to answer questions on topics including how nystagmus affects everyday life and the latest genetic research.



To apply for a nystagmus research award please contact John Sanders, Information and development manager, email:  This email address is being protected from spambots. You need JavaScript enabled to view it.  Tel: 029 2045 4242.  The closing date for grant applications is Monday, June 15, 2015.

Training and tears on Tyneside


NN’s annual open day in Newcastle on May 9th was a training opportunity for some and an emotional event for others.



For some of the student and practicing orthoptists among the 150 plus delegates the event allowed them to talk informally with families they would only otherwise see in a clinical setting. One orthoptist said: “It was wonderful to meet and speak with professionals, people and families with nystagmus outside of the clinic environment. It was amazing the questions parents ask when not in a hospital room. I never expected anyone to be concerned that their child would be slower in coordinating a knife and fork than a child without nystagmus, and it was fantastic to be able to give practical advice as well as clinical advice.”



As happens every year, some people meeting others with nystagmus for the first time found that the experience can be overwhelming. More than one person admitted to tearing up during the event. But all agreed that sharing experiences with others with nystagmus was positive.



Parents too valued the chance to meet adults with wobbly eyes and learn from other families. One mum said: “The feeling of being surrounded by people who understand the concerns that we have about our little girl's Nystagmus and the questions that we have about her future and how best we can help her was so lovely and we met some fabulous people that we look forward to seeing on an annual basis at the Open Day.”



The NN 2015 open day took place in Newcastle’s Centre for Life. Photos will be available on this website shortly and we will post a link to a short video once it has been edited.


Newcastle conference nets 150


More than 150 people will gather in Newcastle on May 9 to relax and learn about nystagmus. The NN Open Day 2015 will bring together parents (and other relations) of children with nystagmus, adults with the condition, teachers, orthoptists, ophthalmologists and other professionals.


The event offers the chance to learn about practical issues such as education, DLA, employment, registration as sight impaired as well as hear about developments in research. Above all, though, delegates at previous Open Days say they value the opportunity to talk to others (peer group support) more than anything else.


This year’s open Day includes exhibitors Optelec, RNC and Useful Vision and has attracted delegates from Belgium, France, Germany and Sweden. Booking details are at http://www.eventbrite.co.uk/e/nystagmus-network-newcastle-open-day-2015-tickets-15275380073


Help create a new test


Cardiff University is looking for around 20 volunteers over the age of 18 with early-onset nystagmus to take part in two research projects between 26th May and the end of June. You only need to make one visit to Cardiff and travel costs of up to £50 per person are available. Taking part in both studies should take around half a day with plenty of breaks. As part of the research you will have a full sight test by a qualified optometrist, who can provide you with an updated spectacle prescription.




The first project aims to develop a new method for testing visual performance in infantile nystagmus. Nystagmus is a dynamic condition, since the eyes are constantly moving; no other condition causes visual input to change from moment to moment. Visual acuity (VA) is an inadequate measure of visual function in nystagmus because it does not address visual timing. This is the major aspect of this new test that Cardiff is developing.




In addition, Cardiff is investigating the effect that nystagmus has on binocular vision. Through this project, they hope to better understand the high prevalence of strabismus and amblyopia (lazy eye) in people with infantile nystagmus.




For more information, or to volunteer to take part, please email Matt Dunn: This email address is being protected from spambots. You need JavaScript enabled to view it. . The Nystagmus Network provides some funding for the research in Cardiff.