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
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
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
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
Living with the triple whammy of nystagmus, myopia and astigmatism, Julia is an accomplished musician. She also sings in choirs, which often happens in poorly lit churches. In her blog post, Julia regaled us with hilarious stories of missing her applause and mistakenly stealing someone else’s limelight all because she cannot see the conductor. She … Continue reading Thank you, Julia
Josh can’t see rain – can you? Josh was born with nystagmus and ocular albinism, but he hasn’t let that hold him back. Josh has been a primary school teacher for 7 years, completed his masters, got grade 8 piano and regularly sings in City of Birmingham Choir at Symphony Hall. Josh has some very … Continue reading Thank you, Josh
The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together. If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome. At our recent virtual Open Day we were … Continue reading Living with Acquired Nystagmus and Oscillopsia?
We are excited to announce the start of a new research study into nystagmus The aim of the study is to gather evidence about people’s perceptions of nystagmus. The results will help shape further nystagmus research and awareness raising strategies, eventually contributing to better understanding of the condition and improved quality of life as a … Continue reading New nystagmus research
We need you! The Nystagmus Network is supporting Professor Chris Harris and his team at the Royal Eye Hospital, Plymouth to investigate further Acquired Nystagmus and Oscillopsia. If you have either or both, we’d love to hear from you. You can help us develop a further research study into these complex, life changing conditions. We … Continue reading Do you have Acquired Nystagmus or Oscillopsia?
People living with nystagmus often experience dizziness and problems with balance. In his radio programme ‘The Uncommon Senses’, Barry Smith explores the senses involved in balance and why our vision is so important. A journey into the human multi-sensory experience, with philosopher Barry Smith and sound artist Nick Ryan. In this episode, we look at … Continue reading How your eyes help with balance