Parent Power is back!


Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars. Each webinar will introduce parents to the special educational needs support … Continue reading Parent Power is back!

Frances Lilley


Frances Lilley has decided to stand down after 5 years as a Trustee of Nystagmus Network.  During this time, she has been performing the role of volunteer education advocate and has provided invaluable advice to countless parents to guide them through the complex and, quite often, challenging world of EHC plans and the support that … Continue reading Frances Lilley

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 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

Thank you, Nadine


Thanks to her book ‘Can I tell you about nystagmus?’, children and their parents feel better able to explain nystagmus to others. In 2020, with the country in lockdown and schools closed, Nadine came up trumps again with advice and tips for parents struggling with homeschooling. Most importantly of all, Nadine allowed us to let … Continue reading Thank you, Nadine

SEND within a COVID-19 pandemic


In his presentation for the Nystagmus Network virtual Open Day 2020, Kevin McManamon, Senior Associate, Educational Team, Geldards LLP sets out the current position of SEND support in schools in England and Wales. To view Kevin’s and all the other presentations, please register here

Homeschooling and nystagmus


A Guest Post by author and nystagmus Mum, Nadine Neckles So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’. COVID-19 has changed a lot of what we do and how we do it, including how and where … Continue reading Homeschooling and nystagmus

Technology use in young people with impaired vision: a new study


Guest post from Saima Begum, University College London I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment. This project aims to examine technology use in young people with vision impairment, and whether this … Continue reading Technology use in young people with impaired vision: a new study

The impact of COVID-19 on visually impaired children


A guest post from Rosaleen Dempsey, RNIB Hi there I am from the children’s services in RNIB. Wonder if you would mind sharing a survey for families about the impact of the COVID-19 crisis on the education and development of children with VI. Survey has been designed by partners in the sight loss sector and … Continue reading The impact of COVID-19 on visually impaired children

A round up of online learning


The Nystagmus Network has put together a handy list of tried and tested online learning resources for parents and carers. It’s a list that’s growing day by day. If you’d like to recommend a resource, please contact us and we’ll be happy to add it to our list. A brilliant ‘how to’ guide for parents … Continue reading A round up of online learning