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

How amazing is Aneeba?


Thank you for sending us all your nystagmus success stories. We just love to read them and we know they bring hope and inspiration to so many people. Today we introduce Aneeba. Aneeba has a rare genetic condition called Lawrence Moon Bardet Biedl syndrome. She’s always worn glasses since she was 8 months old and … Continue reading How amazing is Aneeba?

How amazing is Ellen?


Throughout June we’ve been celebrating your nystagmus success stories in our campaign ‘How amazing are you?’ Today, Ellen shares her story: “My name is Ellen and I’m 32 years old. I’m married and have a little boy who is 3. He’s my inspiration. He’s also my eyes whilst I am out and is very switched on … Continue reading How amazing is Ellen?

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

How amazing is Sonny-John?


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?” On Nystagmus Awareness Day itself a family shares their son’s amazing nystagmus story … “Our eldest boy, Sonny-John has nystagmus, and from as long as we can remember he has been … Continue reading How amazing is Sonny-John?

How amazing is Jane?


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?” Jane believes that having a sense of humour really helps. Here she tells her story: “My name is Jane and I have idiopathic, congenital nystagmus. My wobbly eyes have given me challenges, … Continue reading How amazing is Jane?

How amazing is Alfie?


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?” To his parents, Alfie truly is AMAZING. Here’s what they have to say about him … “As well as having nystagmus, Alfie also has FEVR, a progressive eye condition that affects … Continue reading How amazing is Alfie?

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?” 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?

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

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?” 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?