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"Tales of Northwick" zijn vertaald in het Nederlands Added January 17, 2012 (English version added January 12, 2012) 
De Nederlandse uitgeverij Kaft Media (http://www.kaftmedia.nl/) heeft een Nederlandse versie van het boek "Tales of Northwick"gepubliceerd onder de titel "De avonturen van Balder". De Nederlandse editie bevat dezelfde 9 verhalen over Northwick, de beer met Nystagmus, als de originele editie in de Engelse taal, die gepubliceerd is door het Nystagmus Network. Het boek werd door Els Cornax vertaald. Haar kleinzoon heeft nystagmus. Els zei: "vrienden van mij die het boek besteld hebben en het gekregen hebben vertellen mij dat ze nu beter begrijpen wat nystagmus betekent of kan betekenen voor iemands leven. Kinderen vinden het een leuk boek en nemen de informatie tegelijkertijd mee". De auteur van "Tales of Northwick" John Sanders zei: "Ik ben erg blij dat - dankzij Els en Kaftmedia - de Northwick verhalen nu beschikbaar zijn voor een breder publiek. Ik hoop dat ze ooit, naast het Nederlands, nog in andere talen vertaald worden, zodat nog meer kinderen met Nystagmus er plezier van kunnen hebben." Els en Kaftmedia hebben de naam van de beer Northwick veranderd in Balder, omdat de "th" klank niet in het Nederlands voorkomt en Balder wel een berig-klinkende naam is. Een percentage van de opbrengst van het boek gaat naar het Nystagmus Network Engeland. De originele Engelse versie van het boek is verkrijgbaar bij de winkel van het Nystagmus Network (http://www.nystagmusnet.org/shop.htm). |
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"Tales of Northwick" published in Dutch Added January 12, 2012
Netherland based Kaft Media (http://www.kaftmedia.nl) has published a Dutch language edition of the "Tales of Northwick" book under the title "De avonturen van Balder". The Dutch edition contains the same nine stories about Northwick, the bear with nystagmus, as the original English language edition published by the Nystagmus Network. The book was translated by Els Cornax, whose grandson has nystagmus. Els said: "Friends of mine who ordered the book or have been handed it, give me as feedback that they now know more about what Nystagmus means and how it can affect someone's life. Children like the book for the stories and take the rest on board at the same time. "Tales of Northwick" author John Sanders said: "I'm delighted that – thanks to Els and Kaft Media -- the Northwick stories are now available to a wider audience. I hope that one day they are translated into other languages in addition to Dutch, so that other children with nystagmus can benefit from them too." Kaft Media changed Northwick's name to Balder because the "th" sound does not exist in Dutch and "Balder" is the Dutch word for bear-like. A percentage of the cover price goes to the Nystagmus Network. The original English language version of the book is available from the NN shop |
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Winter Focus on research funding and genetics Added December 20, 2011 
Christmas is a time for giving and NN is no exception, offering the Leicester research team £8,000 towards a hand-held OCT scanner is the cover story on the December issue (number 93) of our Focus newsletter. "Some forms of nystagmus are known to have a genetic cause", so says genetic counsellor Jo Lowndes. There's a report from our October Open Day in words and pictures. Did you swap your glasses for contact lenses in your teens? Have you reached that certain age yet? A familiar story told by Claire Entwistle. We've seen before what an active bunch people with nystagmus are, this time you can share experiences of mountaineering and sailing. Our fundraisers are just as active with running, cycling and driving. And it's thanks to our fundraisers that NN can support projects like the one at Leicester. We send our Focus newsletter to all members of the Nystagmus Network four times a year. Focus is available in print, pdf and audio versions. To join NN click here. |
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Researcher wants your help Added December 9, 2011 A UK ophthalmologist working on nystagmus is looking for better ways to measure the condition. You can help by going to our facebook page and answering the following three questions
Alternatively, you can email your answers to john.sanders@nystagmusnet.org and I will forward them to the researcher. |
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Leicester funding offer Added December 9, 2011 
Irene (r) with colleagues Rebecca McLeanand Frank Proudlock NN is offering Professor Irene Gottlob's research team in Leicester £8,000 towards the purchase of a handheld OCT (Ocular Coherence Tomography) scanner to study the eyes of very young children. Little is known of the postnatal development of foveal structures in the eyes of infants and children. This small, fast, lightweight scanner will for the first time provide detailed images of the eyes of children under the age of six. (a longer version of this article appears in the December 2011 issue of NN's newsletter which is sent to all members. Click join to find out about membership). |
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Nystagmus no bar to quality control Added November 11, 2011 
Jason Sheppard
Customers in the Bristol area might raise an eyebrow if they knew that one of the men carrying out quality control at the ASDA distribution centre in Portbury docks near Bristol is a guide dog user and has nystagmus. On Friday 18th November Jason Sheppard is attending 'the big brunch' at ASDA's head office in Leeds, where he will be presented with a company 'ABCD' award (above and beyond the call of duty) to celebrate and recognise the great job he does despite his visual impairment. Jason said: "I hope to be an inspiration to people with Nystagmus, especially teenagers who may be worried about opportunities in the workplace. I hope that what I and others with the condition have achieved will help to show that many things are possible. I have myself been knocked back in interviews and lost jobs due to my eyesight but I have never given up and am always hard working and passionate in whatever I do." |
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Run for NN in 2012 Added November 9, 2011 
The Dudley family and friends after completingthe Great North Run for NN The Nystagmus Network is offering six guaranteed places to runners in 2012. We have one place in the Virgin London Marathon, one place in the Silverstone adidas Half Marathon and four places in the Bupa London 10k run. To register an interest, please email john.sanders@nystagmusnet.org telling us which race you would like to run, how much you expect to raise and your connection with nystagmus. Sponsored events are a major source of income for NN and essential for funding our core activities of research, helping people affected by nystagmus and raising awareness. We are very grateful to recent runners Max Jones, Owen Jesseman, Mark Kirkham, the Dudley family and Sofie Haidon. To fund future runners, visit our fund-raising page or facebook page. |
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150 attend nystagmus conference Added October 26, 2011 
NN Open Day 2011 (© Nigel Stripe)
"For the first time in 15 years I really feel that we are not alone and that there are people working to improve the lives of people like my son," was how one of the 150 people summed up NN's Open Day in Harrow on Saturday (October 22). Another Mum tweeted: "Amazing day at the NN open day. So worthwhile attending. I recommend it to every member for next year!" NN chair Richard Wilson used imaginative speed-dating techniques to ensure everyone got involved early on. As one delegate said on Facebook: "Really enjoyed our first NN open day. Great to meet everyone and still humming Benny Hill tune! Well done NN team." As well as the interactive sessions, NN scientific adviser Professor Chris Harris explained how evolutionary developmental biology helps us better understand congenital nystagmus. Delegates also had the chance to meet the nystagmus research teams from Leicester and Cardiff, try out low vision aids and fire questions at our panel of experts. Next year NN plans to hold its annual conference in the Manchester area, the first time we have visited the north-west. |
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Cardiff team to show eye-tracker at Open Day Added October 13, 2011 
l-r Phil Jones, Jon Erichsen, Matt Dunn
Cardiff University's Research Unit for Nystagmus is to demonstrate its Tobii eye tracking equipment at the Nystagmus Network (NN) Open Day in Harrow on October 22. The Tobii was funded by NN and provides researchers with an easy way to measure and record nystagmus eye movements. Dr Jon Erichsen and research student Matt Dunn will be on hand to explain the eye tracker and how it works. Two other leading nystagmus research centres will be represented at this year's Open Day. Rebecca McLean and Viral Sheth will be on hand to explain the work they do in Leicester, home to the biggest nystagmus research team in the UK. Professor Chris Harris, lead author of "Early Onset Nystagmus" and scientific adviser to NN, will be giving a talk and answering questions. For information about the Open Day and details on booking, go to |
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NN seeks your views Added October 13, 2011 We would like to hear what you want from the Nystagmus Network. So please take a minute to complete this one page, seven question survey at http://www.surveymonkey.com/s/VKMSCN5. Telling us what you want will help us shape our future services and activities. |
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NN gathers late onset nystagmus life stories Added September 30, 2011 The Nystagmus Network has published first-hand comments on what it is like to have acquired nystagmus (also known as AN or late onset nystagmus). People with AN tend to experience much more movement (oscillopsia) in their vision than people with congenital nystagmus. We believe this is the first time anyone has gathered and published the experiences of people who develop nystagmus as a result of illnesses such as Multiple Sclerosis (MS), stroke and ataxia. We will continue to gather information direct from people with acquired nystagmus and their families and make it available on this website, in our newsletter and other publications. |
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Autumn Focus on DWP and media Added September 23, 2011 
People take notice of Nystagmus Network; this is reflected by the cover story of Focus 92, which tells how after persuasion from NN the Department for Work and Pensions is providing its staff with more information about nystagmus. Focus 92 could easily be re-titled a media special; our first case study hears about Tom Barton's travels to Portugal for a part in a new film which will be shown at the Cannes film festival. Tim Burton tells how after studying for a degree he has been given the chance to work as a TV cameraman. The daily challenges of living with nystagmus are talked about by Yorkshire journalist, Elaine Jinks. The media theme concludes with social media, more specifically the new NN Facebook page. |
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LOOK to run drama workshop at NN Open Day Added August 18, 2011 
Face painting at the 2009 open day
Thanks to charity LOOK (http://www.look-uk.org/) the NN Open Day on October 22 will give young people the chance to take part in a drama workshop. The theme this year is audio described cinema. Many children and young people with a visual impairment miss out on cinema and theatre because they believe them to be inaccessible. The aim of this year's workshop is to raise awareness of audio description services in cinemas and theatres and to encourage more young people to use them. LOOK's Vicky Smith says: "Even though these services are often poor and sometimes unreliable, we believe it is by empowering young people to show an interest that things will improve." The workshop is free and is open to anyone aged 8-25, but please do book in advance. At last year's Open Day, young people had a great time with LOOK making a radio play about hard to see restaurant menus. In 2009, they made a hard hitting but funny video about visually impaired young people having books in a format they can read. You can see the video at http://www.rnib.org.uk/righttoread. |
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Teenage Flickering Added August 4, 2011 The teenage years can be some of the most difficult for people with nystagmus. But, as the latest addition to our young people's pages show, not everyone's experience is the same. And there are positive ways to handle the isolation and any bullying or teasing. One 15 year old told us just how hard it can be when you're the only pupil in your school with nystagmus and no-one else understands. "I have had nystagmus since I was born and to be honest it is the worst thing in my life. I try not to tell anyone about it and try not to admit that I have it." Tom, another teenager, is luckier as he is not the only visually impaired student in his school. He has used the well tried approach of explaining nystagmus to his schoolmates. In our experience that usually puts an end to teasing, as once people understand why your eyes move or why you hold your head in a certain position they generally tend to accept it. |
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Book online for NN's October Open Day Added July 18, 2011 
You can now view the programme and book online for our 2011 Open Day in Harrow, north-west London on Saturday, October 22. This year's event features Professor Chris Harris, lead author of our "Early Onset Nystagmus" book, genetic counsellor Jo Lowndes from Oxford plus Rebecca McLean from the Leicester nystagmus research team. Our Open Days offer a rare opportunity for people with nystagmus to be in the majority, meet others with the condition and question experts. Here's a comment from last year: "Every member of the NN team was welcoming, approachable and friendly. The organisation and content of the day was the right balance of formality and flexibility. We are looking forward to attending next year's Open Day." Professionals are welcome too and benefit from the chance to network and from sessions on what it's like to have nystagmus. One member of staff from a hospital eye department told us after our 2010 Open Day in Birmingham: "I learnt a lot about practicalities and what matters to patients which will really help improve my perspective for the benefit of patients." Finally, it's a chance for us to listen and learn too. As a result of feedback from the Birmingham Open Day, for example, we are now active on facebook and twitter. |
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Nystagmus stories target schools and hospitals Added 30th June, 2011 
Nystagmus Network (NN) has published two story cards about Northwick the bear who has nystagmus to help children, teachers and others understand what it's like to have this unusual eye condition. One story card is for schools, the other for hospitals. The stories are based on the series "Tales of Northwick" written by NN information and development manager John Sanders. The stories will help children, parents and the professionals who work with them to understand and explain the condition and its effects. "Northwick Zeroes In" helps teachers understand some of the challenges faced by children with nystagmus. The story explains how numbers can jump around on the page and Northwick's dilemma about his height. "Cakes and questions" is for hospital staff to hand out to families of children with nystagmus. This story shows that it's OK to have nystagmus, that talking about it makes life a lot easier and that we all ask the same questions. Richard Wilson, Chairman, Nystagmus Network, said: "This is a really exciting development. Northwick Bear can get messages across so much better than a stuffy leaflet. These delightful stories are a fun way for people to understand nystagmus. We hope everyone will enjoy them." You can download PDF versions of the story cards from the Hospital Resources and Education Resources pages. |
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Focus 91 newsletter Added 30th June, 2011 
The cover story of Focus 91 tells about when John Sanders and Kathy Williams met the team and saw diagnostic and research equipment at Leicester, Royal Infirmary. Northwick gets two bites of the cake, because July sees the launch of his new story cards. Rich Hertle from Ohio lists nine surgical operations, treatments and corrections he uses. There's information and tips about DLA. Silence, spring and sore feet describes some of the fundraising of the past few months; the outcome of these fundraising efforts is that NN has helped 350 people over five months. We have two member profiles: John Slade tells a familiar tale of how lady luck helped him and Vicki Wildbore gives encouragement to those going to University in a few months time. |
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FTSE-100 firm seeks NN advice Added 9th June, 2011 A leading UK communications company has asked NN for advice on creating a level playing field for a job candidate with nystagmus. To help other recruitment and HR staff, we suggest using the following guidelines in job interview and assessments:
On a positive note, most people with nystagmus do have successful jobs and careers, although we often benefit from a little understanding and flexibility in the workplace. If as an employer you have questions about nystagmus, please contact us by phone or email |
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Writ large – new posters Added 24th May, 2011 
NN has produced big (A3) posters for use in ophthalmology departments or any services which see large numbers of people with nystagmus. Like our existing A4 posters, these large eye-catching posters tell people what NN does and how to contact us. The posters are available on request free of charge. Hospital staff, local societies for the visually impaired and other organisations seeing people with nystagmus can also contact us for a supply of free leaflets. Telling people about the Nystagmus Network does make a difference as this comment from a mother in Yorkshire shows: "Your website and the publications available have helped me and Richard to learn more about Joshua's condition and also help educate family and friends, so thank you!" Looking ahead, NN will shortly be publishing two Northwick story cards, one for use in hospitals and one for schools. These stories help families, friends and professionals understand some of the everyday problems caused by nystagmus. Samples of these cards will be available free. |
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NN sets date for 2011 Open Day Added 10th May, 2011 This year's Nystagmus Network Open Day will take place on Saturday, October 22, in north-west London. The event is open to anyone with an interest in nystagmus – whether parent, adult, professional, member or non-member. We will publish a detailed programme and booking information in the coming months. Last year's Open Day in Birmingham attracted over 100 people. Our venue this year has room for 200 and we expect it to be fully booked. The day gives you the opportunity to meet others with nystagmus and hear talks about research and other issues. Here are some comments about the 2010 Open Day:
We move our Open Day to different locations every year to give as many people as possible the chance to attend without travelling long distances. In 2012 we hope to find a venue further north, possibly Manchester. |
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Leicester sees 600 Added 20th April, 2011 
L-R Rebecca McLean, Professor Irene Gottlob,NN chair Kathy Williams, Dr Frank Proudlock Professor Irene Gottlob's clinical research team in Leicester Royal Infirmary saw 628 patients with nystagmus in 2010. That's almost certainly more than any other centre in the UK. As well as an experienced team of ophthalmologists, orthoptists, optometrists and others, Leicester has advanced equipment for diagnosing and researching nystagmus, including an Ocular Coherence Tomography (OCT) scanner. OCT is to the eye what FMI scanners are to the brain. The scanner enables the team to take highly detailed images of our eyes which would have been unthinkable a decade ago. The OCT research is behind several discoveries relating to nystagmus that the team is presenting at the ARVO ophthalmology conference in Florida in May. Leicester is now looking for funding -- £90.000 – for a hand held OCT scanner to use with children. Vision scientist Dr Frank Proudlock explains why: "We could find out a lot more about retinal development in children – both with nystagmus and without – with a hand held scanner. Retinal development in children is an important area, but we know so little about it because until now it's been impossible to look at children's eyes with this level of detail." (A longer version of this article will appear in the June issue of NN's Focus newsletter which goes to all members of NN. To find out how to join NN click here.) |
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London, Paris, Wakefield Added 12th April, 2011 
Lindsey Stopp
Lindsey Stopp is running the London Marathon for us on Sunday, April 17th. You can support Lindsey and NN through her justgiving page at http://www.justgiving.com/lindseystopp. The money raised will support families who have already benefited from the work we do as one mum told us last week by email: "I got great support from you in the early years when things were difficult for our daughter. She is doing so well now at school and at home - but it was difficult to see that when things were so difficult for her as a baby." We are incredibly grateful too to Jamie Griffiths who ran the Paris Marathon for us on April 10th in temperatures of 27C. Jamie emailed: "It was a stunning course looping through central Paris twice. I was running to schedule up to the 25km (16 mile) mark heading for a 4.15 hr Marathon. However, the sun, the wall, cramps got the worse of me so I managed to complete it in 4.53." Jamie and team have raised a fantastic £7,000, some of which we hope to put towards the increasing number of funding requests we receive from researchers looking into nystagmus. Last but not least to Wakefield where 13 year old Katie Hodgett raised £88 for NN through a sponsored silence. Katie admits it was a challenge, but adds: "I would like to do something like this again to raise some more money for the Nystagmus Network in the hope that it can help change the lives of people who have the same problem as me." |
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Anecdotal evidence key to DLA claims Added 1st April, 2011 Giving details of how nystagmus affects your daily life increases your chances of making a successful claim for DLA (Disability Living Allowance). Neil Arnott of Social Welfare Training told a training seminar attended by NN in March: "The best way to fill in the DLA form is to use anecdotal evidence. It makes your claim believable." Many people with nystagmus receive DLA, although claims are not automatically successful. Often people with nystagmus receive middle rate care (£49.30 a week) and lower rate mobility (£19.55 a week). DLA is not means tested, is paid whether you are in work or not and is not taxable. The Government has said it wants to replace DLA with Personal Independence Payments in 2013/2014, but has not yet published detailed proposals. A longer version of this article will appear in the June issue of our Focus newsletter which we send to all NN members. To find out about joining NN click here. |
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Focus 90 (March 2011) Added 1st April, 2011 
Focus 90 is very much about people. We have stories about Anne and Harley, both of whom have other health problems besides nystagmus. Lucy hasn't let nystagmus get in the way of her passion for sailing and has the medals to prove it. Do you use a computer? Is bad posture causing you back pain? Chris Goswami has some common-sense advice. Georgina Murray, an Orthoptist from Torquay, sings the praises of the iPad and how it can help at school and college. Anyone affected by nystagmus will relate to the experiences of NN member Mike Hughes. And it wouldn't be Focus without news of research, fundraising and the latest tales of Northwick, the bear with nystagmus. |
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Visual acuity poor measure – Hertle Added March 2011 
Rich Hertle at NN 2009 research workshop
US ophthalmologist Rich Hertle told a UK audience that visual acuity on its own is not an effective way to measure the visual function of people with nystagmus. Hertle was speaking to some 200 ophthalmologists, orthoptists and optometrists at a nystagmus training day on March 11 organised by Great Ornond Street Hospital in London - probably the biggest event of its kind to date. Hertle said factors such as motion, time and sense of visual well-being are critical factors when assessing the quality of vision of people with nystagmus. He also listed the nine different surgical operations - not just tenotomy - that he uses with nystagmus patients as well as drug treatments and refractive correction. Hertle, who is based in Akron, Ohio, says that by using surgery and other approaches he has improved the vision of many of his nystagmus patients. However, he does not claim to have cured anyone: "Nothing I've ever done has cured any nystagmus patient yet. We're just making their vision better." |
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Nero and Nystagmus (March 11, 2011) Added 11th March 2011 
NN members Tim Burton, James Taylorand Tanya Hairman in Cafe Nero Cafe Nero on London's Southampton Row played host to NN's first informal social gathering on March 5. Out of the dozen or so people present, only three did not have nystagmus – and two of those have children with nystagmus. For some it was the first time they had knowingly met others with the condition. One emailed afterwards to say, "I feel I've turned a corner and have accepted my Nystagmus. I feel a lot more confident and upbeat. I felt a huge wave of self acceptance over the weekend after meeting other people with Nystagmus." Another commented: "Thanks again for inviting me today. I found it very beneficial." Watch the website for details of more events like this. We hope to organise something similar in Birmingham in June and are open to suggestions for other locations. Our main event this year – the 2011 Open Day – will almost certainly be in London in the autumn. Next year we hope to move further north, possibly to Manchester. |
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New research in London (February 25, 2011) Added 25th February 2011 
Barry Seemungal
Researchers at Imperial College, London, are investigating how to help people with Acquired Nystagmus (AN) by studying people with Congenital Nystagmus (CN). Consultant neurologist Barry Seemungal and his colleagues hope to discover why people with CN (also known as Early Onset Nystagmus) are usually free of dizziness and visual world motion (oscillopsia), which are major problems for those with AN due to conditions such as multiple sclerosis. The study involves looking at how the brains of people with CN work when viewing different scenes in an MRI scanner. Imperial College will reimburse volunteers for travel and food and in addition will compensate volunteers for their time spent. To find out about taking part in this project, please contact Yuliya Nigmatullina on 020 331 35527 or by email yuliya.nigmatullina09@imperial.ac.uk or Barry at b.seemungal@imperial.ac.uk |
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More turn to NN online (February 2, 2011) Added 2nd February 2011 Almost 30,000 people visited the Nystagmus Network website last year, up 13 per cent from 25,800 in 2009. Total visits rose by nearly 10 per cent to 40,500, while page views were 12 per cent higher at 172,000. Most visitors want information about nystagmus or help with the everyday effects of the condition. One young man wrote that nystagmus "has a huge effect on me emotionally and this can lead me to feel quite low and sometimes worthless... It would be amazing to meet someone like me who has nystagmus." Many parents of children with nystagmus find our website and information a great support after their child is diagnosed. One mother commented: "The literature you publish has been such a lifeline for us. It's so easy to read and has been such a help for our son." Another parent emailed to say that NN was a great source of information when her son was diagnosed and continues to be so. "I'm very grateful to the NHS (National Health Service) for their support, but I really wasn't given much information on Nystagmus when he was first diagnosed, in fact I wasn't told for a good while that his glasses didn't even correct it, and had to source a lot of info from your website!" Emotional support is a vital aspect of our work. NN is a member of VINCE (Vision Impairment Network for Counselling and Emotional support) and will be taking part in the next VINCE conference in Birmingham on March 24. See our events page to find out where else NN will be this year. |
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US researchers summarise nystagmus treatments (January 14, 2011) Added 14th January 2011 
Ohio based researchers Dr Matthew Thurtell and Professor John Leigh have published a round-up of the different treatment approaches to nystagmus. The article in the Journal of Ophthalmology looks at drug treatments, optical and surgical approaches to nystagmus. Professor Leigh (pictured right) attended the international research workshops organised by the Nystagmus Network NN in Abingdon, England, in 2005 and 2009. An abstract of the article is available at http://www.ncbi.nlm.nih.gov/pubmed/21107124. |
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Over 100 new members in 2010 (January 7, 2011) Added 7th January 2011 The number of people joining NN hit 114 last year. This is the highest for some time and takes the total close to 600. During 2010 we welcomed newcomers from the Czech Republic, Sweden, Canada, Australia and the USA as well as the UK. The benefits of belonging to NN include our quarterly newsletter, discounts on our publications and knowing you have someone to talk to about nystagmus. Here's a selection of comments we received by email last year: "I just wish I had known years ago what I know now about nystagmus. It would have made such a difference." "I love what NN is doing, it is a very worthy charity and I know that my mum wouldn't have gotten through a lot of things if it wasn't for you and the rest of the team!" "We always read the newsletter and have found NN so helpful. We're members of the Albinism Fellowship too. NN caters for the eyes while AF deals generally with how you look." "Our patients are finding the leaflets helpful especially when the nystagmus has been recently diagnosed, to have a reliable source of information and support." To find out more about the benefits of membership or to join click here. |
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NN is on twitter (December 16 2010) Added 17th December 2010 
Keep up to date with NN developments at http://twitter.com/nullpoint15, We'll keep you posted through twitter about news, events, research and publications relating to nystagmus as well as changes to this website. |
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Christmas cards raise £400 (December 15, 2010) Added 17th December 2010 
Sales of Christmas cards topped 400 packs by mid December raising over £400 for NN. Apart from the cost of the cards and post & packing, all proceeds (approximately £1 a pack) go directly towards helping people with nystagmus and supporting research into this complex eye condition. NN's volunteer distribution manager Andy Machin said: "This is our best year ever for Christmas cards. I'd like to thank everyone who has purchased NN cards and remind you that you can still place orders on our website." As well as raising funds for NN - which receives no statutory funding - NN Christmas cards are an effective way of raising awareness of nystagmus, he added. |
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Focus 89 (December 2010) Added 10th December 2010 
Graham Dickson works for a multinational bank, travels widely and has nystagmus. In our December 2010 newsletter he recounts his experience of our Open Day on Birmingham. Leicester University researchers provide a breakdown of the many possible causes of nystagmus. And we have a longer version of the article based on an interview with footballer Steven Reid. LOOK's (http://www.look-uk.org/) Jane Bateman writes about beat-boxing and the value of young visually impaired people meeting each other. And of course we have the latest tale from Northwick the bear. Focus is sent free to all NN members. Click to find out about NN membership |
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Soccer star supports NN (November 2010) Added 11th November 2010 
West Bromwich Albion and former Ireland midfielder Steven Reid says NN is doing a great job and plans to help us raise awareness of nystagmus. Steven, whose 18 month old son Harry has nystagmus, adds: "We've read all the NN packs and that's the most information we've come across. It's a brilliant thing you've done." Steven was playing against Manchester United on October 16 so couldn't make our Open Day in Birmingham, but wife Kathleen was able to join us. "She found it so useful just to meet loads of other people with nystagmus and get all that information." After hearing about the Open Day, Steven - who has also played for Millwall and Blackburn and been capped for Ireland 23 times -- contacted NN to offer his support. Like so many families the Reids struggled when the word nystagmus came into their lives, so Steven is keen to do whatever he can to raise awareness of the condition. (a longer version of this article will appear in the December issue of our Focus newsletter which goes to all NN members. Click to find out about NN membership) |
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Parents' Guide back in print (November 2010) Added 4th November 2010 
Early-OnsetNystagmus "Early Onset Nystagmus: A Parents' Guide" - our popular and very helpful book -- is back in print and available through our online shop. Although described as a guide for parents, many teachers, medical staff and others working with those who have nystagmus find the book invaluable too. For instance one teacher of the visually impaired who has been looking forward to the reprint commented: "I have used the book in my previous job and would recommend it to parents." "Early Onset Nystagmus: A Parents' Guide" was written by a team of medical and scientific experts at Great Ormond Street Hospital in London. It answers over 90 questions such as Does nystagmus hurt? Why does my child need a brain scan? and How does nystagmus affect vision? "Early Onset Nystagmus: A Parents' Guide" is available from our website shop. The price is £6 for NN members and £10 for non-members. If you have any difficulty in placing an order please email info@nystagmusnet.org. |
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Open Day 2010: From sad dads to glad dads (October 2010) Added 22nd October 2010 
You know an event has gone well when someone says: "When I booked the Open Day I was dreading it. But I'm glad I came now. It's great. Thank you." That was the first dad, then another walked by full of enthusiasm and chipped in: "I've learnt so much today. Things I didn't even realise I needed to know." Those "things" included how to get support for his daughter at school and even how nystagmus affects her. The two dads were among the 100 or so people who came to the Nystagmus Network Open Day in Birmingham on October 16. As well as parents, they included teachers, researchers and eye hospital staff. The programme covered Disability Living Allowance (DLA), emotional well-being (depression for example is common among visually impaired people), transition between schools or from school to college and work, and a session for parents of newly diagnosed children. Leicester based researcher Rebecca McLean talked about nystagmus and quality of life as well as answering questions about the work of Professor Irene Gottlob's team. And, as usual, the chance to meet others affected by nystagmus made a big difference to many. As one mum and dad said: "We have been members of NN for a couple of years. Now we have been to the Open Day we feel a part of it too." |
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Volunteers wanted in Northern Ireland (October 2010) Added 14th October 2010 
Natasha HealeyMCOptom Researchers at the University of Ulster (Vision Research Dept) Coleraine (UUC) and The Royal Victoria Hospital, Belfast (RVH) are looking for subjects to help with a nystagmus project. The project is called the NINA Study (The Northern Ireland Nystagmus & Albinism Study) and the research team would like to see adults aged between 16 and 40 who have congenital nystagmus. The team is looking at several factors such as vision, refractive error (strength of eyes/glasses), dimensions of the eye (length and frontal curves), and assessing how much impact glare and light has on eyes affected by nystagmus. The project has ethical approval and involves one hospital visit. This visit will take about two hours and will take place at your nearest research hospital (in Low Vision Clinics in either The Royal Victoria Hospital or Altnagelvin Area Hospital). All the tests involve standard clinical procedures and will be fully explained on the day. For further information contact Natasha Healey on 07711711243 or by email healeynatasha@hotmail.com |
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Book now for NN 2010 Open Day (October 2010) Added 28th September 2010 This year's Nystagmus Network's annual Open Day is in Birmingham (UK) on Saturday, October 16. We have sessions on education, DLA, transition between schools, emotional wellbeing, hospital support and our ever popular session for parents of newly diagnosed children. On top of that local ophthalmologist John Barry will be on hand to answer medical questions about nystagmus and our partner charity LOOK is running a beatbox session for young people -- or anyone who wants to join in. Apart from the specialist talks you have the opportunity to meet others of all ages with nystagmus, talk to each other and find out that you're far from alone. One father of a 10 year old with nystagmus recently told me how helpful it was at one Open Day to talk to someone in his 20s who has nystagmus. "It was brilliant talking to Sam. He told me how he plays football and about his job. It was really inspiring for me." Finally, this year's Open day will see the relaunch of our book "Early Onset Nystagmus -- a parents' guide". This book has been out of print for several years, but we will have copies on sale at a special price in Birmingham. For a programme and booking form click here or email info@nystagmusnet.org. |
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Free NN membership in Wales (September 2010) Added 23rd September 2010 Wales Council for the Blind (WCB) is offering to pay for people living in Wales to join NN for a limited period this autumn. To find out how to join NN for free please email john.sanders@nystagmusnet.org. This generous offer is part of WCB's strategy to promote good eye health. WCB is the umbrella agency representing organisations in the visual impairment sector in Wales. To find out more about WCB phone 029 2047 3954 or see the website at www.wcb-ccd.org.uk. |
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Focus 87 (July 2010) Added 12th August 2010 
A new, simpler way of measuring nystagmus eye movements is the cover story in our 16 page June newsletter. In addition, ophthalmologist Maria Theodorou answers questions on laser surgery and nystagmus. Two parents write about the joys and challenges of children with nystagmus, while a teacher who has nystagmus herself, urges schools to think more carefully about assembly activities. Focus 87, which goes free to all NN members, also has information about our October Open Day in Birmingham and another chapter in the life of Northwick the nystagmic bear. |
Posters for hospital notice-boards Added 14th April 2010
Staff in hospital eye departments have asked us for posters about NN to put up on their notice-boards. So, we’ve produced some and they’re available free. Just phone 0845 634 2630 or email info@nystagmusnet.org. The A4 posters have our name, logo and contact details with the words: Advice Support Information in large print. As well as hospital waiting rooms, you can use the posters in local societies for the blind, GP surgeries, or anywhere people with nystagmus are likely to gather. |
Focus newsletter Added 8th April 2010 
In this issue (86), two people tell us about their experiences of acquired nystagmus – one due to an accident, the other due to a stroke. Ophthalmologist Maria Theodorou answers questions about cataract surgery for adults with nystagmus, while Chris McMillan gives a first-hand account of her cataract operation. And Liz Gooderham recalls the moment when she learnt that her son had nystagmus: “When someone says you need to see the top man without giving you a follow-up appointment, you know the news is not going to be good.” Members of the Nystagmus Network receive Focus four times a year. The newsletter is available in print, by email or CD, and on audio CD and cassette. |
Cardiff University research open day Added 10th March 2010 
RUN Open Day 2010
Cardiff University’s Research Unit for Nystagmus (RUN) is opening its doors on Saturday, April 17, 2010, between 11 am and 3 pm. Anyone who has taken part in past research or has nystagmus and would like to find out more is welcome to come along. You will have the opportunity to meet and quiz researchers Professor Chris Harris, Dr Jon Erichsen and Phil Jones among others. You can try out the new eye tracking equipment (funded by NN) which is completely wireless – all you need to do is look at a computer screen. And of course you will meet others with nystagmus. This is a free event and Cardiff University is generously providing a buffet lunch. However, numbers are limited, so to register or for further details please email or phone NN development manager John Sanders at johnsanders@clara.co.uk or 0845 634 2630. |
Angry bookworms Added 8th March 2010 At our October Open Day young people with nystagmus made a video (http://www.outlook-uk.org/) about how important it is for them to have equal access to books. They want all books to be available in large print, audio, Braille and electronic as well as standard print format. The video supports the Right to Read campaign and uses the slogan “we want the same books, at the same time and at the same price.” One participant, Alex, explains how he emailed one of his favourite authors asking him to make his books available in large print. The author did reply, but as Alex says: “his answer was useless”, so he can expect a lot more emails from Alex. Henry, who directed the video, also feels strongly about accessible books: “we do need them, we can read, it’s just that we don’t have the ability to read normal size print.” You can hear about the making of the video and other activities at http://cdn2.libsyn.com/lookpodcast/005_Right_To_Read_Campaign.mp3. And you can find out how to get involved in the Right to Read campaign at www.rnib.org.uk/righttoread |
DLA advice Added 13th January 2010 People often ask us to help with applications or appeals for DLA (Disability Living Allowance). We’re happy to help in various ways. For example, we can provide a supporting letter or put you in contact with experts on DLA appeals. Many people with nystagmus – including children – can claim some DLA, although often not without a struggle. So, we’ve recently added some tips to help you fill in the DLA application form. |
Forum members Added 10th January 2010 We’ve started 2010 by purging our online forum of inactive users, largely because many are would-be spammers. Most regular forum members will still be able to log on. If you can’t, please accept our apologies and register again. The best way to avoid future purges is to add the occasional post to the forum. |
Focus 85 Newsletter, December 2009 Added 20th December 2009 “Hi, I’m Luke and I have nystagmus. I don’t really like P.E. at school because it’s mostly ball games. I can’t see the ball very well and no-one passes it to me because I will drop it, so I’m not that good at team games. That’s why I like skateboarding.” That’s probably not something many parents expect very young children with nystagmus to be writing when they reach their teens. But in our experience, Luke’s story is far from exceptional and is just one of the items in the latest issue of Focus. You can also read about how Sana is getting on at university, about bullying and about one mother’s resentment towards her local eye clinic. Plus a report with photos on our 2009 Open Day and of course the latest Tale of Northwick. Focus is available in print, audio and electronic format and goes to all member of NN. |
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Star Wars Sequel Added 24th November 2009
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Added 7th November 2009 This issue of our 16 page Focus newsletter leads with the outcomes of September's international research workshop on nystagmus -- drug treatment trials, surgery options, genetics progress, modelling and measuring nystagmus. The performing arts loom large with articles about two young people with nystagmus who are treading the boards and the first ever stage adaptation of a Northwick story. Also -- sporting success in the USA and advice on Disability Living Allowance (DLA). Focus is sent to all NN members and is available in print, audio and electronic versions. |
NN appoints new development manager Added 26th October 2009 NN has appointed John Sanders as its UK development manager. As NN’s only employee John, who has nystagmus himself, will be providing information and emotional support by phone and email. He will also be giving talks about nystagmus, its effects and the latest developments in research and treatment. NN chair Kathy Williams said: “John takes over at a very positive time for the Network. We recently celebrated our 25th birthday, held our second international research workshop and became BCLA (British Contact Lens Association) charity of the year. As a volunteer, John supported the NN committee in achieving these goals and I know he will ensure that NN continues to thrive in his new role.” John said: “I have nystagmus, so I know from personal experience how it affects people both in practical and emotional terms. From the support I’ve had through the Nystagmus Network, I also realise how much we can do to help people overcome the serious challenges presented by nystagmus.” During the 1990s John worked for the Reuters news agency before becoming a freelance journalist in 1998. He has been an NN committee member or volunteer for more than 20 years. John also sits on two ethics committees and volunteers with the RNIB, Cardiff Institute for the Blind and UCAN Productions, the not for profit theatre company working with young visually impaired people. John is based in Cardiff, but has already travelled to or is scheduled to visit Birmingham, Chester, Gwent, Hereford, London, Plymouth, St Ives (Cambs) and Wokingham in his new role supporting people affected by nystagmus. |
An uplifting 25th birthday party Added 13th October 2009 The Nystagmus Network celebrated its 25the birthday on October 3, 2009, so we turned our annual Open Day into a bit of a party with cake, cards and balloons. What was the best part of the day? Well, here’s what some of you told us:
And the worst part? So what happened on the day? Research and treatment -- Five experts answered a barrage of challenging questions. Neurologist Barry Seemungall explained how difficult it can be to work out the optimum dosage of drugs such as gabapentin. Ophthalmologists Jay Self and Eva Gajdosova handled questions on genetics, surgery and diagnosis. Optometrist Debbie Wiggins demonstrated the impact of stress and advised on how to maximise vision with contact lenses and glasses. Vision scientist Frank Proudlock updated us on the many nystagmus projects – ranging from drugs to surgery and reading – in Leicester University. We also heard how thinking is developing on albinism, which almost always goes hand in hand with nystagmus. Researchers now suspect that albinism may be much more complex than previously thought and may exist in very subtle variations. Young people -- Staff and volunteers from the charity LOOK worked with more than 20 young people printing T-shirts and making a video about the Right to Read campaign. LOOK National Officer Vicky Smith: “I’m really happy with the way things went. It might have looked like organised chaos, but everyone had a great time.” Finally a comment from a father and daughter who were there: “I just wanted to let you know that it was an event that we very much enjoyed. The highlight for us was listening to people's experiences, especially those of the Young Set (Sam, James, Jonathan and Louise) - a great bunch of people.” |
BCLA names Nystagmus Network charity of the year Added 26th September 2009 The BCLA (British Contact Lens Association) has chosen the Nystagmus Network (NN) as its charity of the year for 2009/10. Among other benefits, NN will enjoy free attendance at BCLA conferences, free publicity in mailings to BCLA members and an article in the BCLA newsletter. BCLA Secretary General Vivien Freeman commented: ‘We are delighted to support Nystagmus Network in this way and would encourage our members to get involved.’ NN honorary chair Kathy Williams said: “We are delighted to be BCLA charity of the year, especially in the year when NN is celebrating its 25th anniversary. This special link with the BCLA will help NN to raise awareness of nystagmus and better support the thousands of people who struggle with this complex eye condition every day.” |