Nystagmus Awareness Day 20 June 20


Nystagmus Awareness Day – 20 June 2020 It’s national and international Nystagmus Awareness Day on Saturday 20 June 2020. We may all be staying at home this year, but we can still mark the day and raise awareness to ensure that the 1 in 1,000 adults and children living with nystagmus enjoys a greater understanding … Continue reading Nystagmus Awareness Day 20 June 20

How amazing are you?


In the run up to Nystagmus Awareness Day on 20 June 2020, we are once again asking you to share your amazing nystagmus success stories. Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard … Continue reading How amazing are you?

Nystagmus is …


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 …

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?

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?