Do you use your local offer?


Since 2014 all UK local authorities are required to put information about services for families with disabled children in a special web page called the Local Offer. Have you found yours? Do you use it? Is the Nystagmus Network listed as a support service? We’re trying to make sure that everyone receiving a diagnosis of … Continue reading Do you use your local offer?

Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia


Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Acquired Nystagmus and Oscillopsia. Patsy’s story, a case study of AN and Oscillopsia Our lovely volunteer, Patsy introduced the work she has been doing, putting together a case study of her AN and Oscillopsia journey to support the … Continue reading Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia

Notes from the February Forum for adults with congenital nystagmus


Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Congenital Nystagmus. ECLOs Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Clinic Liaison Officer) is, how they can help support you and where to find them. Please contact Ian at ian.springett@nystagmusnet.org if … Continue reading Notes from the February Forum for adults with congenital nystagmus

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

Vision impairment and employment – a research project


Guest Post: Dr. Liz Ellis, VICTAR, University of Birmingham The Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham is conducting research to understand more about the factors which contribute to employment outcomes (the good and not so good) for individuals with a visual impairment, living and/or working in Greater London. … Continue reading Vision impairment and employment – a research project

Nystagmus does cause visual crowding – it’s official


It’s long been understood that people with nystagmus can struggle to pick out objects from an image or face in a crowd. That’s a phenomenon called visual crowding. But how does nystagmus cause this? Now Vijay, Taylor, nystagmus researcher at London’s Moorfields Eye Hospital and University College London has shown that the eye movements associated … Continue reading Nystagmus does cause visual crowding – it’s official

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

Thank you, Zoe


It’s fitting that our final nystagmus hero of 2020 is someone who has been working tirelessly all year looking after some of our most vulnerable people. Zoe is a care supervisor and head house keeper in a care home, working over 40 hours a week. She was born with nystagmus and optic atrophy. She struggles … Continue reading Thank you, Zoe

Thank you, Mike


What can we say about Mike that hasn’t been said already? He endured so much for the nystagmus cause this year – including very wet feet, a constantly rumbling tummy and often only the company of chickens! But Mike still walked 3000 miles to raise £2,500 for the Nystagmus Network. A-m-a-z-i-n-g! And after all that … Continue reading Thank you, Mike

Thank you, Mervyn


Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment. Thanks to the work of Dr Melvyn Thomas and the research team at the University of Leicester … Continue reading Thank you, Mervyn