The Nystagmus Network is delighted to be supporting a Nystagmus Patient Information Day, running at Moorfields, London on Saturday 24 November. Moorfields Eye Hospital is holding an information day for adults with nystagmus since childhood. The day will allow you the opportunity to directly influence the patient pathway from diagnosis to treatment and the support … Continue reading Nystagmus Patient Information Day
At Open Day 2018 the Nystagmus Network’s volunteer Education Advocate, Frances Lilley, officially launched the charity’s Education Resource HUB. The HUB is the result of years of research and experience and brings together in one place the resources parents and carers need to navigate their way through mainstream education support for a child with nystagmus, … Continue reading Education Resource HUB – launch
Published today as part of National Eye Health Week, a new YouTube video by Emily Davison, also known online as the Fashioneyesta, tells what nystagmus is and how it affects daily life. Watch Emily’s video here.
Steph and her team completed the Yorkshire 3 Peaks Challenge on Saturday in 11 hours 45 minutes. Well done, team! They were doing this in honour of Steph’s young son, Henry, who has nystagmus and they’ve so far raised over £1,000 for the Nystagmus Network! Thank you from everyone at the charity. You can still … Continue reading Yorkshire 3 Peaks – completed!
This Sunday morning Claire A, Claire B, Glen, Matt, Richard B, Richard P, Tom, Vanessa, Vicki and Vicky will be scaling down the UK’s tallest piece of public art, the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park to raise money for nystagmus research at Moorfields and University College, London. Our 10 intrepid Team Nystagmus Network … Continue reading The abseil is this weekend!
As national ‘Remember a Charity Week’ begins, the Nystagmus Network would like to make a plea to all our members and supporters to consider remembering us in your wills. We understand that your family and friends must always come first. All we ask is that, once you have looked after those closest to you, you … Continue reading Don’t forget us, please!
We’ve just heard that James and his little brother, Thomas, have successfully completed their summer fundraising challenge to raise a phenomenal £677 for two charities. James (8) and Thomas (5) have spent their summer holidays walking 118 miles in aid of Chromosome 18 Registry and Research Society Europe and the Nystagmus Network. Why these charities? … Continue reading They did it!
Glen is a member of the Nystagmus Network and a true friend of the charity. We were privileged to meet him last year when he led a workshop at Open Day on building social networks. You can read all about Glen’s adventures as a successful young man about London, who just happens to have aniridia … Continue reading Glen’s taking the abseil challenge. Could you?
Introducing Claire, the next member of Team Nystagmus Network Abseil. Claire is a keen rock climber, so abseiling her way down the ArcelorMittal Orbit is going to be a walk in the park! She’s doing it all to raise money for nystagmus research at Moorfields and UCL. If you’d like to join Claire, please contact … Continue reading Claire’s taking the leap for nystagmus. Want to join her?
Ella is a third year student at Nottingham Trent University. She just happens to have nystagmus. She is full of advice and inspiration for other young people with nystagmus. Hear her interview with RNIB Connect Radio.