#YouMadeItHappen – Delilah


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Delilah and her family offered the perfect story for our Jeans for Nystagmus Genes Day campaign, helping us raise awareness of nystagmus as a genetic disorder. Thank you, Delilah You can read Delilah’s … Continue reading #YouMadeItHappen – Delilah

#YouMadeItHappen – Roger


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Roger inspired us to write a brand new guide to nystagmus – for adults. He generously shared his own thoughts on the subject to start us off and members of our community chipped … Continue reading #YouMadeItHappen – Roger

#YouMadeItHappen – Nadine


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Nadine decided she didn’t want her little daughter to grow up in a world where people didn’t know about nystagmus, so she wrote her book ‘Can I tell you about Nystagmus?’ which explains … Continue reading #YouMadeItHappen – Nadine

#YouMadeItHappen – Mike


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Mike is a professional benefits expert who also happens to have nystagmus. He is always ready with advice and guidance which he offers freely to Nystagmus Network members. He also writes our guide … Continue reading #YouMadeItHappen – Mike

#YouMadeItHappen – Patsy


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Patsy is one of our newest volunteers. It’s thanks to her that we were able to start up our virtual support group for people diagnosed with Acquired Nystagmus. Living with AN herself, Patsy … Continue reading #YouMadeItHappen – Patsy

Open Day 2019 – the highlights


Over 200 people gathered together on Saturday 28 September at the spectacular Principality Stadium, Cardiff for the Nystagmus Network Open Day 2019. To the strains of Sospan Fach, by Cerys Matthews, Chairman of the Nystagmus Network, Richard Wilson OBE took to the stage to welcome everyone. Up next, Nystagmus Network Founder and Honorary President, Vivien … Continue reading Open Day 2019 – the highlights

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 …

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 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?

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?