The Nystagmus Network trustees publish today their Research Strategy document for the next 3 years of nystagmus research, collaborations and funding arrangements. CLICK HERE to download your free copy today. Read more about nystagmus research, here.
Children with nystagmus receive a grant from Jeans For Genes Day 2019 In July 2019, the Nystagmus Network is celebrating after hearing the news they will receive a grant from Genetic Disorders UK, the national charity which organises the annual fundraising day, Jeans for Genes Day. This grant, from funds raised on the Day, will … Continue reading Jeans for nystagmus genes
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
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
On Nystagmus Awareness Day we are proud and delighted to announce that our newest supporter, Mike plans to walk the length of New Zealand to help find a cure for nystagmus. The route he’s following is the Te Araroa pathway, taking in both the north and south islands, on foot and sometimes in a kayak, … Continue reading Mike’s wiggly walk
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
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
Hear Dr Rubina Ahmed from Fight for sight and Sue from Nystagmus Network talking about their brand new jointly funded nystagmus research grant in this excerpt from RNIB Connect Radio. LISTEN NOW
Don’t forget that, throughout June, in the run up to Nystagmus Awareness Day 2019, we’ll be sharing all your amazing nystagmus stories. So, if you’d like us to feature your success or achievement, or your child’s, or nominate someone you know, please send your story and photo to: firstname.lastname@example.org.
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!