Jeans for Nystagmus Genes: Delilah’s story


Delilah’s story: Delilah is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day. This year, Jeans for Genes Day runs from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school in … Continue reading Jeans for Nystagmus Genes: Delilah’s story

A survey on glaucoma and nystagmus


You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today. “The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus … Continue reading A survey on glaucoma and nystagmus

Going to uni with nystagmus


Today’s guest post comes from Ella, author of the blog, Life of Ella. Ella is a First Class Honours graduate and a civil servant. She also happens to have nystagmus. Some people with nystagmus might think that university is not for them, but Ella is here to share her experiences of support and success. I … Continue reading Going to uni with nystagmus

Manchester meet up


The next meeting of our new North West nystagmus network will take place on Saturday 7 September in central Manchester, 10am to 12 noon. Nystagmus Network trustee, Marie Turnbull will once again be your host . We look forward to welcoming back the families and adults who came along last time and to seeing some … Continue reading Manchester meet up

Nystagmus and driving by Sophie


This guest post is from blogger, Sophie who shares her experience of living, laughing and loving with nystagmus in her blog ‘Nystagmus in a Nut Shell’. Nystagmus and Driving – what’s the real deal? Well, I’ve had experience in this matter, so let me share it with you… Can people with Nystagmus drive? Without a … Continue reading Nystagmus and driving by Sophie

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 …

Congenital nystagmus and reading


At the recent celebration for Professor Irene Gottlob at the University of Leicester, Dr Frank Proudlock spoke about nystagmus and reading. Frank commented that people with congenital nystagmus can read at the same speed as fully sighted people, provided the print is large and clear enough, that the intensity of the nystagmus does not affect … Continue reading Congenital nystagmus and reading

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?