In the run up to Nystagmus Awareness Day on 20 June, we published lots of your nystagmus success stories in our campaign “How amazing are you?” One of the most popular stories was Roger’s. When Roger first contacted us he began by saying “I have enjoyed Nystagmus for nearly 80 years.” He went on to describe how … Continue reading Nystagmus is …
On Thursday 20 June, Nystagmus Awareness Day a group of Nystagmus Network trustees met with Marsha de Cordova MP in Parliament. Earlier that morning, Marsha had tweeted her own Nystagmus Awareness Day video message in which she asked us all to celebrate the amazing achievements of people with nystagmus and support and encourage our children … Continue reading Trustees discuss Parent Power with Marsha
In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Claire is doing a fundraising tandem sky dive for the Nystagmus Network this summer, because she and her son both have nystagmus. This is going to make her son even more … Continue reading How amazing is Claire?
In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” For those of you who don’t know Mike, he’s a hugely valued member of the Nystagmus Network team. He’s our volunteer benefits adviser and the fount of all knowledge when it … Continue reading How amazing is Mike?
In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?” Today we introduce our friend, Hanna Have you met Hanna? Hanna has congenital nystagmus and lives in Germany. She has been coming to the UK Nystagmus Network Open Day for a … Continue reading How amazing is Hanna?
Ben is doing a ‘wobbly cycle ride’ this Saturday, 4 May. He’ll be riding 35 miles for his brother, who has nystagmus, to raise money for the Nystagmus Network and to achieve his Duke of Edinburgh award. Here’s what Ben says: “I am Ben and I’m 13 years old. I am doing this cycle ride … Continue reading Ben’s a true nystagmus hero
Neill Mison is an IT consultant who has recently rediscovered his love of and talent for painting and drawing. Neill now styles himself as ‘the visually impaired artist’ and is enjoying some considerable acclaim for his impressionist style. The subtle colouring and fine detail of his paintings is particularly surprising since Neill has ocular albinism … Continue reading Introducing Neill
Are you good at IT? The Nystagmus Network is looking for the right person to offer us some IT support. The skills, knowledge and experience we’re looking for include: Programming languages Common operating systems Software proficiency Web management Data collection The time commitment isn’t huge, just a couple of hours here and there, but your … Continue reading Volunteer needed
On 15 November we mark the birthday of Nye Bevan, the founding father of the National Health Service, which marks its own 70th birthday this year. Although it is not clear how he acquired it and how it affected his life, Bevan is known to have experienced nystagmus. Aneurin Bevan (15 November 1897 – 6 July 1960), … Continue reading Happy Birthday, Nye!