This year for Nystagmus Awareness Day and ‘wobbly week’ the Nystagmus Network is joining forces with parkrun UK to offer you the opportunity to get out into your local park and walk or run for nystagmus awareness. You can take part in parkrun just about anywhere in the country, every week of the year. But … Continue reading parkrun for Nystagmus Awareness Day
The Nystagmus Network has a free to download lesson plan about nystagmus. Designed for use in schools and preschools on Nystagmus Awareness Day or any other day of the year, the aim is to raise awareness of nystagmus and its wider effects and to help a child with nystagmus feel more included in the classroom. … Continue reading A lesson in nystagmus
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
The Nystagmus Network celebrates national and international Nystagmus Awareness Day each year on 20 June to spread the word about nystagmus.
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!
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
The day before Nystagmus Awareness Day 2018, Information and Development Manager, Sue, and trustee, Peter, travelled to London to meet a very inspirational man – internationally acclaimed ‘blind’ photographer, David Katz. Several exciting nystagmus-related projects were discussed – more of those to come. David will, of course, be the charity’s guest speaker at Open Day … Continue reading An inspiring meeting with David Katz
On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible. Meeting at Portcullis House, trustees, all wearing their Nystagmus Network … Continue reading Charity trustees meet Marsha
On Nystagmus Awareness Day 2018, the Nystagmus Network’s Information and Development Manager, Sue, shared her nystagmus story and explained why it’s so important to continue to raise awareness of nystagmus. Read Sue’s online article here.
A guest post from Sara’s Mum … This is my daughter Sara. She’s 17 now and born with albinism and nystagmus. Her sight is badly affected, but nothing stops her!!! She is in mainstream school, a huge circle of amazing friends and lives for sports. She has an all Ireland silver medal for camogie (an … Continue reading How amazing is Sara?