With the close of registrations less than two weeks away, the Nystagmus Network has been given four more places in The BUPA London 10,000 metre run. The event takes place at 10.00 am on Bank Holiday Monday, May 27th. We already have four runners in this event. T find out about joining them and raising funds for NN contact This email address is being protected from spambots. You need JavaScript enabled to view it. g.
Anglia Ruskin University (ARU) in Cambridge is looking for volunteers with nystagmus to look at letters. All the testing is non-invasive, requiring participants only to look at a TV screen and make judgments about visual targets. Participation will involve 3 to 6 sessions, each lasting between 1 and 1.5 hours. You should have visual acuity of 6/15 or better in one or both eyes while wearing spectacles or contact lenses (if needed). Except for nystagmus and the possible requirement to wear spectacles or contact lenses, participants should not have any other visual problems. Participants will be compensated for their time at a rate of £6 per hour. To volunteer or find out more, contact Dr Siderov by e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. or phone 0845 196 2695.
We wouldn’t blame you if you thought you were reading the Nystagmus Network diary rather than Focus 98: dates for Wobbly Wednesday, Open Day, the International Research Workshop and Carrots NightWalk have all been confirmed. We wouldn’t blame you either if you thought you were reading a nystagmus research special. Besides the forthcoming NightWalk and workshop, there is research taking place at Leicester University and Moorfields Eye Hospital. The series summarizing The Challenge of Nystagmus research book continues. We have case studies from two teenagers Hannah and Freya. Also Nicki talks about the challenges faced by a Mum with nystagmus after glaucoma surgery and shares some of the strategies she uses. Finally there’s a story about a monster called Bloggle, he’s got lots of friends and eyes that wobble.
Leicester based medical student Vijay Patel is looking for volunteers to take part in a project examining the link between head posture/nodding and nystagmus.
This project aims to gain data which may broaden our understanding of how the brain controls movements of the head and eyes. The tests (non-invasive) should take no more than three hours. Leicester will fund travel expenses where possible.
To take part in this research, you must be an adult, have idiopathic infantile nystagmus, or nystagmus secondary to albinism or achromatopsia. Also, volunteers must not have had eye surgery in the past. Vijay stresses that he will not be able to do any diagnostic tests so patients need to be sure of their nystagmus status. Contact Vijay at This email address is being protected from spambots. You need JavaScript enabled to view it. or on 0116 258 6291 to find out more.
You could win two tickets (worth up to £80) to this year’s Open Day simply by donating £5 to the Nystagmus Network on our justgiving page at http://www.justgiving.com/kerrypleasant. This year’s big nystagmus get-together is in Bristol on October 5th and we’re expecting 150 people including families, adults with nystagmus, researchers, medics and other experts.
We’re giving away four tickets altogether – two pairs of two. Ticket prices are £25 each for NN members and £40 each for non-members. Names will be drawn on the 30th April 2013 and the two lucky winners will be picked at random. Tickets will go on sale after the draw during May. Please remember to leave your name when donating and email This email address is being protected from spambots. You need JavaScript enabled to view it. so we can contact you.
Here’s what one mum said about the 2012 Open Day in Manchester: “As the parent of a young child it was incredibly useful to speak to people across all age ranges about their experiences of nystagmus. Being able to access researchers in person and sign-up for trials was also fantastic.”
And from an orthoptist who was there: “Great techniques to interact with other people. Loved the music. Fantastic day – would recommend to other colleagues.”
Chris Hopkins, Rob Hindley and Dara Hayes are the latest winners of football memorabilia donated by NN patron and footballer Steven Reid to raise money for the charity. Chris wins a pair of Steven’s boots while Rob came away with Jonas Olsson's boots. Dara Hayes, our first ever winner from Ireland, won Ben Foster's gloves.
Steven, whose son has nystagmus, has donated and raised over £8,000 for the Nystagmus Network in little over a year. Steven is also raising the profile of nystagmus through his willingness to talk about this eye condition on Twitter and in national media. To be in with a chance of winning next time follow Steven on Twitter @stevenreid12 and see his justgiving page at http://www.justgiving.com/Steven-Reid12
NN patron and Premier League footballer Steven Reid is once again raising funds for the charity by auctioning memorabilia on Twitter. Signed boots and gloves are the prizes donated by Steven, Jonas Olsson and Ben Foster. To be in with a chance of winning simply leave a donation of at least £5 on Steven’s JustGiving charity page: http://www.justgiving.com/Steven-Reid12. The three lucky winners will be drawn by Steven on Thursday March 7th. All funds go towards research and supporting people with nystagmus.
NN is looking for 30 people to raise funds for a nystagmus research grant. All you have to do is a sponsored walk of 6 or 15 miles -- at night in either London or Cardiff on Friday/Saturday, September 20/21. You will be in the Nystagmus Team, so you won’t be walking alone. Here are some comments from last year’s walkers:
Claire Moss: “it was an amazing and unforgettable experience.”
Stuart Cohen: “Completed the Night Walk yesterday and was good fun. At one stage we walked past a bar.....and Liam Gallagher was there! A Paparazzi was there so our team ran over and got pictures taken with him.”
Jake Morris: “The atmosphere was brilliant, the company more than friendly; all the people around me had a permanent smile, be that orange-tinted. Crossing Tower Bridge, at around 3am, we were isolated from other walkers but the end was within our reach. As the IMAX came into view, we had a sprint finish which was greeted by a wonderful cooked breakfast and a beautiful sense of achievement.”
In the 2012 Carrots NightWalk we helped create a £15,000 grant to fund nystagmus research in Moorfields Eye Hospital in London. NN is one of a number of charities joining in this Fight For Sight (FFS) initiative. FFS will match our £7,500 to create a £15,000 research grant for nystagmus. Click below to download a registration form.
Premier League player Steven Reid has agreed to become a patron of the Nystagmus Network (NN). Steven, who plays for West Bromwich Albion, contacted NN after his son Harry was diagnosed with nystagmus. He has already been active publicising the work the charity does as well as raising around £7,500 by auctioning football memorabilia. Steven has also shown great generosity towards many other supporters of the charity.
Steven said: “It’s an honour and privilege to become a Patron for Nystagmus Network who are doing a great job in raising awareness, funds and helping tackle the condition. With my own son Harry having the condition it’s a charity close to my heart and hopefully I can continue to help in any way possible to raise awareness of the great work that all at Nystagmus Network are doing.”
Richard Wilson, Nystagmus Network chair, said: “Steven has been a great supporter of the Nystagmus Network. We are delighted he has become our patron to help us raise awareness of this eye condition and really make a difference to people with nystagmus."
Full press release: Premier league footballer is new patron of sight charity
We know nystagmus affects quality of life in all sorts of ways, but no-one has ever measured its impact before. The University of Leicester plans to do just that by developing a quality of life questionnaire that is specific to nystagmus.
If you’re an adult with nystagmus and you live in the UK you can help the researchers in Leicester to develop this questionnaire. If you haven’t yet taken part in this research, all you have to do is answer a survey about yourself and nystagmus. You can get the survey by emailing Rebecca McLean This email address is being protected from spambots. You need JavaScript enabled to view it. with your postal address and saying you would like to take part in the nystagmus quality of life research. Rebecca will then post you the survey, consent form and information explaining the project.
The Nystagmus Network is carrying out a survey of people's experiences of eye hospitals. You can take part in this short 10 question survey at https://www.surveymonkey.com/s/GWDZXKM.
We hope the survey will provide a clearer idea of the information provided by hospitals to families affected by nystagmus. We will share the results of the survey with the Royal College of Ophthalmologists and any other interested bodies.