Thank you – you are amazing

As ‘wobbly week’ draws to a close for another year we just wanted to thank everyone for making Nystagmus Awareness day 2019 such a success. Thank you to our fundraisers, event organisers and all the parkrunners. Thank you for your amazing nystagmus success stories, your videos, photos, your donations, presentations, displays and quizzes and thank … Continue reading Thank you – you are amazing

Trustees discuss Parent Power with Marsha

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

Our wobbly week competition

It’s wobbly week! And it’s Nystagmus Awareness Day this Thursday, 20 June. We want to raise as much awareness of nystagmus as possible and make sure that everyone has a chance to take part, so today we’re launching our wobbly week competition: Nystagmus is … Following on from Roger’s amazing description of his nystagmus, we … Continue reading Our wobbly week competition

Parent Power – our new project, funded by the Community Fund

The Nystagmus Network is delighted to announce that we have been awarded funding by the Community Fund for a brand new project, called Parent Power. The aim of the project is to empower parents and carers to advocate for their children with nystagmus to ensure they access appropriate educational support in school or early years … Continue reading Parent Power – our new project, funded by the Community Fund

Our fabulous Baker boy!

Steve Baker, who’s Twitter handle is, appropriately, @fabbakerboy, will be running the London marathon this Sunday for nystagmus research at Moorfields. Not content with just one marathon, Steve, who has congenital nystagmus himself, is also taking on this year the QE Marathon in March and the North Downs Way 50 mile ultramarathon in May. Steve … Continue reading Our fabulous Baker boy!