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NN heads north


NN’s 2015 Open Day is moving to Newcastle (UK) this year. The date is Saturday, May 9, and the place is the Centre for Life. This is your chance to meet others with nystagmus, talk to experts and find out what nystagmus means for education, employment and life in general.

Our keynote speaker is actor Gerard McDermott, who will explain how nystagmus has not held him back from a life in TV, radio and theatre. We’ll have the usual session for parents, an update on benefits and a crèche. Most people agree, though, that the best thing is simply being with 150 other people who know what nystagmus is. Not sure about taking the step? Watch the video of last year’s Open Day in Leicester at https://www.youtube.com/watch?v=oRtcgICylak&feature=youtu.be&a.


We move the event around the country every year so sooner or later most people can come along without having to travel too far. Recently we’ve held annual Open Days in Leicester, Bristol, Manchester, Birmingham and London. Book now at https://www.eventbrite.co.uk/e/nystagmus-network-newcastle-open-day-2015-tickets-15275380073

Training day attracts national interest


Eye health professionals from across the UK are heading to Bristol for a one day training course about paediatric nystagmus, on Friday, 30 January, 2015. The event, which is being organised by NN, will enable delegates to learn about the latest developments in diagnosis, genetics, treatment and management of patients with the complex eye condition nystagmus.


The training day is intended for ophthalmologists, orthoptists, electrophysiologists, ECLOs, hospital based optometrists and any other professionals interested in nystagmus. Speakers include ophthalmologists and other clinical staff from the University of Plymouth, the University of Southampton, Leicester Royal Infirmary, the Royal Eye Infirmary Plymouth and Cardiff University.


Paediatric nystagmus - a clinical training day - takes place in Bristol’s City Centre Marriott Hotel. The delegate fee is £50 including lunch and refreshments. This is a BIOS accredited training event. To find out more see http://www.nystagmusnet.org/cms/index.php/about-us/clinical-training-day.


Family foundation raises record £70,000 for nystagmus


The family, friends and colleagues of the late Giles Warman have raised £70,000 to support research into nystagmus and raise the profile of this poorly understood condition in conjunction with NN. £40,000 has already been allocated to genetic research by Southampton University. NN will use at least £10,000 to increase awareness of nystagmus.




The Giles Warman Foundation was set up by friends and family of City stockbroker Giles Warman who died suddenly in May 2013. The Foundation decided to raise funds in memory of Giles and support NN after his fourth grandson, Oscar, was born with nystagmus.




Oscar’s Mum, Hermione Warman, said: “As a mother there is nothing more devastating than being told that your perfect son has an incurable condition. I was distraught when, after being passed from doctor to doctor, we were told our gorgeous son Oscar had congenital idiopathic nystagmus and there was nothing we could do. My world felt like it was shattered, all the hopes and visions I had for Oscar’s future collapsed. Slowly, and following the wonderful conversations with the nystagmus network I realised we could get through this, and with positive action we can ensure that Oscar has the brilliant future we've always imagined for him.”




The Southampton research, led by Consultant Ophthalmologist Mr Jay Self, will result in a genetic diagnostic test enabling doctors to give a much faster and more detailed diagnosis than at present. The benefits include identification and treatment of associated disorders, the ability to tell parents how their child’s vision is likely to develop and improved genetic counselling for families about recurrence risk.