Wobbly Eyes in German

The Nystagmus Network UK sends huge congratulations to Hanna and her fellow trustees for the successful launch, at the end of 2018, of the German Nystagmus Netzwerk.

Our two organisations are working closely together to ensure that information and support is available for German speakers everywhere, affected by nystagmus.

To this end, today we celebrate the publication of ”Wackelige Augen”, the German translation of our very own booklet for children, Wobbly Eyes.

Hanna came along to our Open Day in September 2018. You can read her report, here.

To contact the German Nystagmus Netzwerk, email them here or find them on Facebook.

David’s amazing Open Day film

We were so lucky to have the inspirational David Katz as our guest speaker at Open Day 2018. Not only did he deliver an amazing presentation, but he was around all day chatting with delegates and supporting Maayan with her Movement and Spirit workshop for the children.

If you weren’t able to come to Open Day this year, David’s short film will give you a flavour of what you missed. Enjoy!

Watch the film here.

Thank you! You were amazing!

Nystagmus Network trustees and staff would like to say a huge thank you to everyone who helped make Open Day 2018 such an amazing day.

Thank you to all our members and other delegates for supporting Open Day, especially those who travelled long distances and had to get up ridiculously early on a Saturday to be with us. Thank you for your positivity, for your unfailing interest and appreciation.

Thank you to the children for taking part in the workshops, for helping their parents with the table activities and, especially, for designing a Christmas card. Much more about that later!

Thank you to our wonderful keynote speaker, Marsha De Cordova MP, who shared her personal nystagmus story and had parents gasping at her experience of being excluded from story time at nursery. Today she champions the rights of every adult and child with vision impairment.

Thank you to the inspirational David Katz, who, having rubbed shoulders with the rich and famous throughout his stellar photography career, was humbled to finally meet so many people who have nystagmus just like him.

Thank you to our researchers and clinicians who brought us right up to date with their work and, mostly, achieved this in language we could all understand!

Thank you to Jennie from Guide Dogs and Ben from RNIB for their informative presentations and for their valuable time and expertise answering delegates’ questions during the day.

Thank you to Roselle from Albinism Fellowship UK for her pop up presentation and for her offers of support to families affected by albinism.

Thank you to Wil, who inspired us all never to let nystagmus hold us back in anything we do.

Thank you to Mike, the fount of all knowledge when it comes to benefits and nystagmus, for his DLA and PIP workshops and for his patience in dealing with enquiries throughout the lunch break.

Thank you to Adventure Plus and Maayan for providing the children with such engaging workshops to take part in. We have some wonderful photographs to share!

Thank you to Wendy and Hazel from Guide Dogs and Tim from Royal National College for chatting with delegates and sharing so much invaluable information.

Thank you to James for the lovely guitar recital at lunch time.

Thank you to our exhibitors: Graham from Aspire, Dave from Dolphin, Rebecca from Humanware and Malcolm from Orcam for introducing us all to the latest technologies to support vision impairment.

Thank you to Jay, Neil and the Istead team for their professionalism in supplying the sound and music and, as always, for their total unflappability.

Thank you to Matt for the stunning photography which we will begin sharing on our website and elsewhere shortly.

THANK YOU EVERYONE! Open Day would not happen without you.



A research focus for Open Day

This year’s Open Day has a huge emphasis on nystagmus research. Throughout the day delegates will be able to visit our Research Hub and speak with researchers and clinicians from Moorfields, London, the School of Optometry and Vision Sciences at Cardiff University, the School of Ophthalmology and Orthoptics at the University of Sheffield and the Southampton Eye Unit, Southampton General Hospital and the University of Southampton. Each team will also be presenting their latest work in the main auditorium and taking questions.
In addition, we will have with us, among others, representatives from the Royal Eye Infirmary, Plymouth, Queen’s Medical Centre, Nottingham, the University of Birmingham, Aston University and, of course, our nystagmus research funding partners, Fight for Sight.
There will also be presentations and workshops on education support, mobility and independence, assistive technology, benefits and lots, lots more.
Open Day is also a great opportunity for us to celebrate the successes of our members and supporters. At lunch time there will be a guitar recital by James, who achieved Grade 3 in music at the age of 9 despite struggling to read sheet music.

Roselle is coming to Open Day

Because there is such a close link between albinism and nystagmus, the Nystagmus Network works closely with Albinism Fellowship UK. Chair of AFUK, Roselle Potts, will be joining us this year at Open Day to speak with researchers, to find out more about our education advocacy service and chat with families affected by ocular or oculocutaneous albinism.

Try VR at Open Day

The Nystagmus Network is currently funding pioneering research at the University of Sheffield which could really help improve the quality of life of people who acquire nystagmus in adulthood.

Acquired Nystagmus is usually accompanied by oscillopsia, which means that the subject sees a moving image rather than a stable one. This is a particularly disorientating and debilitating symptom of this form of nystagmus.

Dr Helen Griffiths and her team have tapped into virtual reality technology to develop glasses which allow a patient with oscillopsia to see a stable image.

You can try the prototype at Open Day!

Open Day tickets on sale now!

Tickets for the Nystagmus Network Open Day 2018 go on general sale at midday today. With a packed line up of speakers and presenters, including Marsha De Cordova MP, Shadow Minister for Disabilities and David Katz, internationally acclaimed ‘blind’ photographer, alongside presentations from the UK’s top nystagmus research teams and workshops on education support, benefits, technology and mobility, you won’t want to miss out on the biggest nystagmus event of the year.

Book your ticket TODAY by clicking this link.

An inspiring meeting with David Katz

The day before Nystagmus Awareness Day 2018, Information and Development Manager, Sue, and trustee, Peter, travelled to London to meet a very inspirational man – internationally acclaimed ‘blind’ photographer, David Katz. Several exciting nystagmus-related projects were discussed – more of those to come.

David will, of course, be the charity’s guest speaker at Open Day in September, bringing us stories of his long and illustrious career in photography, the experience of making his film, Through my Lenses, and, most recently, his assignment of a lifetime to the PyeongChang Winter Paralympics.

Charity trustees meet Marsha

On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible.

Meeting at Portcullis House, trustees, all wearing their Nystagmus Network T-shirts, briefed Marsha on the awareness-raising work of the charity ahead of her keynote speech at Open Day this September.