Sue’s at VIEW


The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually. The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown. Sue’s virtual presentation on nystagmus in the classroom is exciting lots of … Continue reading Sue’s at VIEW

Notes from the February Parents’ Forum


Thank you to everyone who joined us for the Nystagmus Network February Parents’ Forum. Homeschooling Although it was Half Term for some, homeschooling was mentioned quite a bit. We talked about requesting modified print versions of online work to reduce the amount of screen time children are exposed to during this time. We loved the … Continue reading Notes from the February Parents’ Forum

Notes from the January forum for adults living with CN


It was so wonderful to see and hear people exchanging experiences and tips on Tuesday evening, 26 January (morning for those who joined us from New Zealand!).  Here are just a few notes from our discussions. Jigsaws online There are lots of websites offering jigsaws to do onscreen. I tried TheJigsawPuzzles.com.You can change the background … Continue reading Notes from the January forum for adults living with CN

Notes from the January AN/Oscillopsia Forum


With people joining us from both sides of the Atlantic, there was some very interesting discussion at the most recent Nystagmus Network forum for adults with Acquired Nystagmus and Oscillopsia. Symptoms It is always reassuring, particularly for new members of the group, to hear the wide range of symptoms others are experiencing. These range far … Continue reading Notes from the January AN/Oscillopsia Forum

Notes from the January Parent Forum


The Nystagmus Network runs regular virtual get togethers for parents and carers on Zoom. Here’s Sue’s report on the January event, which focused on homeschooling. It was lovely to see Mums and Dads on the Nystagmus Network Parents’ Forum this month. You’re all doing a great job on the homeschooling front, but I think it’s … Continue reading Notes from the January Parent Forum

Nystagmus Networking


With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can. Keeping you connected Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month. For parents There will be a virtual parents’ forum at 8pm on Tuesday 12 January. … Continue reading Nystagmus Networking

Nystagmus Network hosts UK research workshop


On Friday 2 October, the Nystagmus Network once again hosted the annual UK nystagmus research workshop. This is an opportunity for researchers, clinicians and academics to get together to share their work and plan greater collaboration. They are, after all, all working towards the same goal. The workshop took place via zoom. Nystagmus Network trustees … Continue reading Nystagmus Network hosts UK research workshop

Nystagmus doesn’t stop me …


The theme of the Nystagmus Network virtual Open Day 2020 is the phrase ‘Nothing will stop us!” That’s because we believe that nystagmus needn’t stop you from doing (almost) anything you want to do. So this month we’re running our Open Day 2020 COMPETITION! To enter, all you have to do is show us what nystagmus doesn’t stop you from … Continue reading Nystagmus doesn’t stop me …

Visiting a High Street Optometrist


What happens when you’re discharged from the hospital eye clinic and need to visit an optician’s on the High Street? Can staff on the High Street really support you with your sight if you have nystagmus? Can they prescribe the right glasses or contact lenses for you? In their presentation for the Nystagmus Network virtual … Continue reading Visiting a High Street Optometrist

Sometimes we all need more marshmallows


In her presentation for the Nystagmus Network virtual Open Day 2020, Alison Blackman QTVI will talk about resilience and how to boost it. Resilience is the ability to overcome adversity, reduce stress and bounce back from setbacks. In her presentation, Alison explains how to boost resilience in young people with nystagmus. She talks about the … Continue reading Sometimes we all need more marshmallows