We may all be staying at home, but we can still mark national and international Nystagmus Awareness Day. Here are just some of the ways you can get involved. How amazing are you? In the run up to Nystagmus Awareness Day 2020, we are once again asking you to share your amazing nystagmus success stories. Not only … Continue reading Nystagmus Awareness Day 2020
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 …
Nystagmus Network supporter, Phil Morris organised a charity cricket match on Sunday 30th June 2019. The teams were Phil’s own Hendrefoilan Hedgehogs versus an Invitational 11 from a number of other teams around the west of Swansea. A great game was had by all with a post match BBQ, cake stall and raffle. Due to … Continue reading Howzat?
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
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?
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?
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?” 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?
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?
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?