James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart. James (8) and Thomas (5) have decided to challenge themselves to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and … Continue reading James and Thomas’s Summer Challenge
Members of the Nystagmus Network have just 24 hours left to book their free priority places for the 2018 Open Day in September. If you haven’t already done so, please use your link to book your place NOW! Remaining tickets will go on general sale tomorrow. Watch this space for details!
The school summer holidays may have only just begun, but for teachers this is the time they think about preparing all those courses and lessons for the new school year. The Nystagmus Network understands that teachers want to be particularly geared up to support children in their class with nystagmus. That’s why we’ve produced our … Continue reading Resources for teachers and parents
Did you know that RNIB has a tax team that supports blind and partially sighted people with tax, tax credits and HMRC issues across the UK? The team, based in Liverpool, is supported by HM Revenue and Customs (HMRC). Mark Rogerson from RNIB’s Tax Advice Service told us how the team makes a difference to … Continue reading A helping hand with taxes
The Nystagmus Network has teamed up with training organisation Visualise to ensure that everyone involved in testing people’s eyesight is nystagmus aware. You can help make sure that all optometry clinics and practitioners are up to speed, by taking part in this survey. Thank you!
Glen is a VI blogger, friend and member of the Nystagmus Network. Our delegates enjoyed his extremely useful workshop at Open Day last year on building social networks. More recently, Glen has turned his attention to another of his areas of expertise: assistive technology. In his latest blog, Glen shares a video follow up explaining … Continue reading Advice from Glen on apps and phone tech
The Nystagmus Network is hugely grateful to King Cross Surgery in Halifax for their amazing support on Nystagmus Awareness Day 2018. Practice Manager, Heather, whose 8 year old son has nystagmus, says: “The Network was and is an invaluable resource to us as new parents, to understand his condition and how it may affect him … Continue reading Thank you, King Cross Surgery!
The Nystagmus Network is funding equipment and testing to underpin nystagmus research taking place at Cardiff University School of Optometry and Vision Sciences, in collaboration with the genetics research team at the University of Southampton. On behalf of the Cardiff team, Nikita Thomas reports: “Our study attempts to investigate how visual function in Idiopathic Nystagmus … Continue reading Nystagmus research – a progress report
As photophobia is a frequent accompaniment to nystagmus and ocular albinism, we’re happy to join in a day of celebrating sunglasses and raising awareness of the importance of protecting your eyes, whether you have nystagmus or not, from damaging UV rays. We’re enjoying some beautiful, warm sunny weather across the whole of the UK right … Continue reading Celebrating National Sunglasses Day!
We couldn’t resist one more ‘amazing’ nystagmus success story. Not everyone with nystagmus can drive, but Bradley has turned driving into his philosophy on life. My name is Bradley. I’ve had nystagmus since birth. My parents found out about it when I was 4. As a child, I was in and out of hospitals. It … Continue reading How amazing is Bradley