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WE'RE HEADING TO READING

People with an interest in the eye condition nystagmus are heading to Reading on Saturday 7 May for #NYSTAGMUSNETWORK2016.  This will be the first time the Nystagmus Network has held its annual Open Day in the area.  The event at the city’s Hilton Hotel brings together families and adults with nystagmus along with health and education professional with an interest in the eye condition that affects around 1 in 1,000 people.  Nystagmus means involuntary movements of the eyes and there is currently no cure.

 

Key to the success of the annual Open Day are the interactive sessions, these enable parents of children newly diagnosed with nystagmus to chat with people born with the condition.  Sessions at #NYSTAGMUSNETWORK 2016 include education, work, benefits advice and research updates.

 

Richard Wilson, Chairman, Nystagmus Network, said: “Our annual Open Day is the biggest event in Europe specific to nystagmus.  The emphasis of the day is to learn about nystagmus, and share experiences but most importantly to have fun.  It’s wonderful to see the lightbulb go on for so many people as the realise they are not alone.  Adults with nystagmus enjoy coming too and are more than happy to share their stories of what it’s like to have nystagmus.”

 

Places at the Nystagmus Network Open Day can be booked online via https://www.eventbrite.co.uk/e/nystagmus-network-reading-open-day-2016-tickets-20965963762?aff=efbevent Tickets including lunch cost £30 for NN members and £50 for non-members.  Children under the age of 8 go for free and between 8-16, £10. There will once again be a crèche for children under the age of 8.

 

On social media use #NYSTAGMUSNETWORK 2016 to connect with Nystagmus Network Open Day.

 

For more information about the Nystagmus Network, contact Tel: 0345 634 2630, Email: This email address is being protected from spambots. You need JavaScript enabled to view it.   or visit the website: http://www.nystagmusnet.org

 

Researchers seek volunteers with acquired nystagmus

 

A research project looking at whether magnets may help some people with acquired nystagmus is open and looking for volunteers in the UK to take part. You can read more about the project at http://www.uclhospitals.brc.nihr.ac.uk/news/%C2%A3500k-use-magnetic-forces-treat-dancing-eyes.

 

If you think you might be interested in taking part please email Parashkev Nachev at This email address is being protected from spambots. You need JavaScript enabled to view it. . Sending an email does not commit you to taking part.

 

Acquired nystagmus is generally nystagmus which starts in adult life and is caused by, for instance, multiple sclerosis, stroke, head trauma or neurological disease. The researchers are NOT looking for people with nystagmus which starts in infancy and is variously known as Early Onset Nystagmus, Infantile Nystagmus, Congenital Nystagmus, IIN and INS.

 

NN ANNOUNCES OPEN DAY SPEAKER

The producer of two nystagmus videos will be the keynote speaker at the Nystagmus Network Open Day on Saturday 7 May at the Hilton Hotel, Reading.  Kristina Venning will talk about making NN’s ‘The way we see it’ and ‘Professional perspectives’ videos. Kristina will also share stories with delegates about her media career and what it’s like starting out as a mum when you have nystagmus and albinism.

 

The Open Day at Reading is NN’s annual gathering for people who have the eye condition nystagmus, families of children born with it and eye health professionals.  The aim of the day is for people affected by nystagmus to meet others like themselves, share experiences of what it's like to have nystagmus and learn from the experts.  Sessions for the day will cover new parents, education, benefit advice and research updates.

 

Places at the Nystagmus Network Open Day can be booked online via https://www.eventbrite.co.uk/e/nystagmus-network-reading-open-day-2016-tickets-20965963762?aff=efbevent Tickets including lunch cost £30 for NN members and £50 for non-members.  Children under the age of 8 go for free and between 8-16, £10. There will once again be a crèche for children under the age of 8 which will be on a first come first served basis.  For more information please contact, Tel:  0845 634 2630, Email: This email address is being protected from spambots. You need JavaScript enabled to view it.  

 

Kristina Venning produced two short videos for NN in 2015.  They give an overview of what it’s like to have nystagmus and an update on the latest in research and treatment for this eye condition which affects 1 in 1,000 people.  The videos can be viewed at https://m.youtube.com/watch?v=Ey-UD5Vzu_Q  and https://m.youtube.com/watch?v=n0Awdks9Eag

 

Record number of enquiries in 2015

 

The Nystagmus Network replied to more than 1700 emails, phone calls and social media requests for help and information during 2015, the highest number ever. The most common concerns are about discrimination, driving, education, employment, treatment and the widespread lack of information and understanding about nystagmus.

One of the very first callers of the year commented: ““I was so pleased just to discover the website ... nystagmus is incredibly frustrating.” The mother of a three year old with nystagmus and albinism said: “You’ve told me more in the last 10 minutes than I’ve learnt in the last three years,” adding, “I feel a lot better now, I really do.”

Calls from people with Acquired Nystagmus (AN) are often the most challenging. One woman said: “I have drawn myself into the black hole, thinking I will be useless and no good.” Although the medical options for AN are currently very limited – something that may well change in the next few years – in our experience simply being listened to and having the condition explained helps most people enormously. As another AN patient said: “I wouldn’t be calm like this in the big, lonely nystagmus world. I wouldn’t know where to go or what to do without NN.”

We provide support globally too, with many emails coming from abroad. One family in South Africa wrote: “Thanks again for your help – we have had very little help up to now and it makes such a difference to have some guidance.”

You can email the NN helpline at This email address is being protected from spambots. You need JavaScript enabled to view it. , contact us on Facebook at https://www.facebook.com/NystagmusNetwork/ or phone (UK only) 0845 634 2630.

 

A record £1,000 a week into research (December 2015)

 

The Nystagmus Network put more than £1,000 a week into university and hospital based projects research during 2015 – our biggest commitment to research so far. NN supported world-leading genetic research in Southampton, the creation of a new eye movement laboratory in Sheffield and a study in Moorfields Eye Hospital, London, which among other goals aims to discover whether there is an optimal age for null point surgery.

The first research award of 2015 went to Southampton and was made possible thanks to a large donation from the Giles Warman foundation (GWF). In addition, orthoptics students at Sheffield University will have a new eye movement recording laboratory, thanks to NN and donors the EBM Charitable Trust. The year ended with backing for a study at Moorfields Eye Hospital, London,  that further illustrates NN’s collaborative approach to research funding with money coming from partners Fight for Sight and the Giles Warman Foundation.

Vivien Jones, Nystagmus Network president, said: “The projects we have supported in 2015 will all lead to better support for nystagmus patients and in some cases potential treatments and will give hope to future generations of babies born with the eye condition. Working collaboratively with donors means we are able to put even more money into nystagmus research.”

 

“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/,