Sue at VIEW


Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs). Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms. Sue was part of … Continue reading Sue at VIEW

Parents and carers get together


Parents and carers of children and young people with nystagmus are warmly invited to our first Parents’ Get Together of the year. We are delighted to share that Becky Hyams will be joining us as our special guest. Becky is a second year university student, studying Advertising and Digital Marketing. She has nystagmus herself. She … Continue reading Parents and carers get together

A winter warmer for darker days


We’re taking part in the #TheGreatGetTogether – please join us We are hosting two online get togethers this month. For people living with Acquired Nystagmus our online get together takes place on Wednesday 18 January from 5pm. For people living with Congenital Nystagmus our online get together is on Thursday 19 January from 7pm. Please … Continue reading A winter warmer for darker days

Glaucoma Awareness Week 2022


The Nystagmus Network is marking Glaucoma Awareness Week 2022, the UK’s national week to raise awareness of glaucoma. The theme for this year is ‘Put your sight in the spotlight’, and we are supporting the initiative by encouraging everyone to have a regular sight test. Glaucoma is the name of a group of eye diseases … Continue reading Glaucoma Awareness Week 2022

Volunteer for us!


The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey? If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like … Continue reading Volunteer for us!

Nystagmus awareness at work


A guest post After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate. It was a positive move and I get lots of support … Continue reading Nystagmus awareness at work

It’s so nice to be appreciated


In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation. … Continue reading It’s so nice to be appreciated

A new guide to nystagmus and benefits


From our monthly virtual support networks to our free benefits advice, the Nystagmus Network is always here for you. As we emerge from the pandemic, we’re all feeling the financial pressure of increasing fuel prices, the rise in the cost of living and, for some, job insecurity. So, we’ve put together a new guide to benefits. Alongside our bespoke booklet on DLA, … Continue reading A new guide to nystagmus and benefits

Parent Power April


The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend a further session in our series of Parent Power webinars. Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and … Continue reading Parent Power April

Our Landmark weekend


This Friday to Monday Sue and members of the Nystagmus Network acquired nystagmus forum are spending time together in a beautiful, historic building, courtesy of the Landmark Trust. This is the first time everyone has met in person since they began getting to know each other online in March 2020. We look forward to getting … Continue reading Our Landmark weekend