David Katz – our special guest speaker at Open Day 2018

We are delighted to announce that David Katz, the internationally acclaimed photographer, will be joining us as our special guest speaker at our annual Open Day on 29 September.

David was with us all in spirit last year, of course, when we were honoured and privileged to have been granted permission to premier his amazing film, Through my Lenses. In the film David reveals that, throughout his success behind the camera, he managed to conceal the fact that he is actually registered blind. He speaks personally and very movingly about his upbringing, the gift of a first camera from his father and the support from his mother, in particular, who taught him a lesson that will stay with him for life – there is no such word as can’t.

David is currently enjoying yet another official photography assignment, one which we know will hold a very special place in his heart. He is in Pyeongchang, covering the Winter Paralympics.

We look forward to seeing David, again, in Birmingham on 29 September.

 

Marsha de Cordova MP – our Open Day keynote speaker

We are delighted to announce that we shall be joined on Open Day this year by Shadow Minister for Disabilities, Marsha de Cordova.

Marsha has nystagmus and is severely sight impaired. She recently explained to BBC Radio 4’s Intouch programme how she manages her vision problem as part of her busy professional life.

The photograph is by Graeme Robertson for the Guardian.

Every Wednesday is Nystagmus Awareness Day on Facebook

We started national and international Nystagmus Awareness Day, also known as Wobbly Wednesday, back in 2013. But every Wednesday is awareness day on our Facebook page.

This means you can talk about any aspect of nystagmus you choose and ask any questions you like. This is your forum to talk about everything to do with nystagmus.

We will, of course, be celebrating the actual Nystagmus Awareness Day later in the year. See today’s further blog post for exciting news about this year’s theme!

Nystagmus Awareness Day 2018

The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day.

Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.

In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.

To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.

Please watch our blog and social media posts for further news.

Nystagmus Network launches new publication on nystagmus and driving

Whether or not people with nystagmus can drive is probably the most frequently asked question the charity receives. Because nystagmus is such a complex condition and affects everyone differently, there is no definitive answer. In our new publication, Nystagmus and Driving, we address all the issues, answer your questions and signpost to free and concessionary alternatives.

Nystagmus Network and Fight for Sight fund two new nystagmus research projects

Nystagmus Network and Fight for Sight have partnered to fund research aimed at the early detection of nystagmus and improve the quality of life of those with nystagmus

Fight for Sight, the UK’s leading eye research charity, and Nystagmus Network, the foremost charity in the UK providing support and information about nystagmus, are working in partnership to fund research into a complex condition characterised by repeated involuntary movement of the eyes. Through the partnership, two research projects into nystagmus have been awarded.

Dr Lee Mcilreavy from Cardiff University will use the funding from Fight for Sight and the Nystagmus Network to determine whether a novel eye tracking approach can correctly identify the patterns of eye movement made by those with infantile nystagmus. This study could lead to a simple and child-friendly eye tracking test that does not rely on expensive technology. This has the potential to detect the condition earlier and allow children and families to receive an earlier diagnosis.

Dr Helen Griffiths, at the University of Sheffield, has been awarded funding to develop an image stabilisation technology in virtual reality (VR) to treat a troubling symptom called oscillopsia, where the individual perceives the world in a continuous and erratic motion due to involuntary movements of the eyes. She will work towards stabilising images on the retina in individuals with acquired nystagmus. A VR headset with integrated head tracking will be configured to track the direction of gaze. This data will be used to adjust the VR display in real time so that a stable view is projected onto the retina of the user, independent of eye orientation. For as long as the user wears the headset, the observed image will be stable. This alternative solution will offer relief to those who have this form of nystagmus.

Michele Acton, CEO of Fight for Sight, said: “We are pleased to be working in partnership with Nystagmus Network to fund research into this complex eye condition. Both research projects have the potential to positively impact the lives of those living with nystagmus. Only by funding research will we begin to tackle nystagmus.

”Vivien Jones, President of the Nystagmus Network and Chair of the Nystagmus Network Research Sub-committee, said: “It is a pleasure to join with Fight for Sight in making this award to Cardiff University for their plan to develop a means of diagnosing infantile nystagmus in the community setting. We hope that this award will mean the plan can be brought to fruition with all the benefits this will bring to families in terms of more accessible diagnosis.

We are also delighted to join Fight for Sight to fund a project developed by the University of Sheffield to deal with one of the most distressing symptoms that can go with acquired nystagmus – oscillopsia, where the individual perceives the world in constant motion. Sheffield propose that a way of offering relief from this is through stabilisation of the image on the retina by developing image stabilisation technology in virtual reality (VR). This would be a major breakthrough for those who acquire nystagmus in later life, and who suffer from oscillopsia.”

 

Richard receives New Year’s honour

The Nystagmus Network is delighted and proud to announce that our charity Chairman, Richard Wilson, has received an OBE in Her Majesty the Queen’s New Year’s Honours list today.

Richard says:

“This award is primarily for my work as a Civil Servant for the past 36 years, but undoubtedly it also reflects my time as a Trustee and Chairman of the Nystagmus Network.  I am hugely humbled and proud to have been recognised in this way.”

 

Making the most of education – Rory Cobb

The Nystagmus Network was delighted to have Rory Cobb with us at Open Day 2017 to lead off the parents’ conference with an informative and inspiring presentation. Rory has a life time’s experience of working in the field of education and supporting children with low vision. Rory was ably assisted by his RNIB colleague, Sue Keil.

Here is their presentation: Rory Cobb presentation

 

 

Nystagmus research update from Southampton

The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.

Each team presented news of the latest developments over the past year and highlighted work in progress for the future.

Mr Jay Self BM, FRCOphth, PhDAssociate Professor at Southampton University and Consultant Ophthalmologist at Southampton General Hospital, joined by his colleague, Dr Helena Lee, NIHR Academic Clinical Lecturer in Ophthalmology at the University of Southampton, delivered this presentation.

Jay Self
Helena Lee