On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk? On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 … Continue reading Nystagmus in the open and the Big Blind Walk
Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world. We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template. For those organising a fundraising event, … Continue reading Nystagmus Awareness Day – for clinics
Schools can take part in Nystagmus Awareness Day, especially if there is a pupil who has nystagmus. Talking about nystagmus, celebrating ‘nystagmus in the open‘ will help us raise awareness of the condition and help the children affected explain it to their friends. This can help remove the sense of isolation some children feel. We … Continue reading Nystagmus Awareness Day – for schools
Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please … Continue reading Nystagmus Awareness Day – for sports clubs
Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or … Continue reading Nystagmus Awareness Day – for snow men!
To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting! Sue and her husband have been members … Continue reading Nystagmus in the garden
If you or someone in your family has nystagmus, then make sure you meet your ECLO (Eye Clinic Liaison Officer). You can ask for them the next time you visit the clinic, or find their details on your local authority’s ‘local offer’ page, under visual impairment or sensory services. Alternatively you can search the RNIB’s … Continue reading Do you know your ECLO?
A research paper is republished this month into the quality of life of people living with nystagmus. Professor Irene Gottlob and Dr Rebecca McLean from the University of Leicester shared their findings in the British Journal of Ophthalmology. Their report followed an extensive research study, funded jointly by the Nystagmus Network and Fight for Sight. … Continue reading Nystagmus and Quality of Life
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 … Continue reading Marsha de Cordova MP – our Open Day keynote speaker
Every Thursday on our Facebook page we publish the latest news on nystagmus research or publish details of new nystagmus trials that you can take part in. We are currently supporting these trials: The Southampton University Hospital team need to find people with albinism and nystagmus, aged over 60 so that Mr Jay Self and … Continue reading Thursday is research news day on Facebook