Hear Dr Rubina Ahmed from Fight for sight and Sue from Nystagmus Network talking about their brand new jointly funded nystagmus research grant in this excerpt from RNIB Connect Radio. LISTEN NOW
Don’t forget that, throughout June, in the run up to Nystagmus Awareness Day 2019, we’ll be sharing all your amazing nystagmus stories. So, if you’d like us to feature your success or achievement, or your child’s, or nominate someone you know, please send your story and photo to: firstname.lastname@example.org.
Steve Baker, who’s Twitter handle is, appropriately, @fabbakerboy, will be running the London marathon this Sunday for nystagmus research at Moorfields. Not content with just one marathon, Steve, who has congenital nystagmus himself, is also taking on this year the QE Marathon in March and the North Downs Way 50 mile ultramarathon in May. Steve … Continue reading Our fabulous Baker boy!
Sadly Nystagmus Network trustee and London marathon runner, Sam Jones has been forced to pull out of Sunday’s run due to a knee injury. Sam was all geared up to run his third marathon to raise money for the charity founded by his mother, Vivien, shortly after his birth and nystagmus diagnosis in 1984. Read … Continue reading Get well soon, Sam
Thanks to the generosity of our members, fundraisers and supporters and our longstanding partnership with Fight for Sight, the UK’s leading eye research charity, the Nystagmus Network is delighted to be able to announce our biggest ever funding commitment to nystagmus research. At the Nystagmus Network nystagmus research workshop in September 2018, charity trustees asked … Continue reading Our biggest ever investment in nystagmus research
The Nystagmus Network will once again be hosting a UK nystagmus research conference in 2019. Following the success of last year’s event, attended by research and clinical teams from the Universities of Cardiff, Sheffield, Plymouth and Southampton and from Moorfields Eye Hospital and Fight for Sight, the charity will be funding a further event with … Continue reading Nystagmus research conference 2019
The Nystagmus Network is delighted to share news of the launch today of a brand new book about nystagmus. Written by Nadine Neckles, the book looks at nystagmus from a child’s point of view and provides insights for parents and professionals alike. Nadine is a friend of the Nystagmus Network and previously contributed an article … Continue reading Can I tell you about nystagmus?
The Colson family are serious about fundraising for nystagmus research. Sisters Laura and Ellie are taking part in the Peak District Ultra Challenge this summer, their first ever ultra marathon, whilst their brother, Ryan, CEO of the family firm, Colson Skips, is getting his entire workforce right behind them. If you’d like to sponsor Laura … Continue reading Fundraising? It’s a Colson family affair
The Nystagmus Network works tirelessly to raise awareness of nystagmus, not only on Nystagmus Awareness Day but throughout the year. Why raise awareness? We firmly believe that the more people who know about nystagmus and understand its effects, the better life will be for the adults and children affected by the condition. New for 2019 We’ve revised … Continue reading Raising nystagmus awareness in 2019
Push Yourself Further – 10 great events in 2019 New for 2019 – the Nystagmus Network has partnered up with Action Challenge to bring you 10 fundraising challenges. Ellie and Laura have already signed up. What’s stopping you?! Are you a regular walker and new to endurance events? Perhaps a seasoned trekker looking for testing … Continue reading Who’s up for a challenge?