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?
Amanda is a long time supporter of the Nystagmus Network UK and our unofficial US spokesperson. As a professional freelance writer, who also has nystagmus, she is well placed to tell her amazing nystagmus story … My Nystagmus Journey: Fifth grade diagnosis and beyond Fifth grade – that’s when my life changed because of my … Continue reading How amazing is Amanda
Here’s Gary’s sporty nystagmus success story … Since 2014 I’ve been playing county cricket for Warwickshire Visually Impaired Cricket Club. The club comprises players of all ages (my shirt number is 49 – the age at which I made my debut) and varying levels of sight. Several of our players are registered blind and we … Continue reading How amazing is Gary?
It was a fantastic event. There were so many amazing people there to inspire adults and children to get out on the slopes and enjoy the snow. David Katz was there, sharing stories of his amazing photography career, despite having ocular albinism and nystagmus. The Outspan Rebels VI ski team were there, with their amazing … Continue reading Did you come to Snow Camp?