Could you take the plunge and abseil down from the 262 feet high viewing platform at the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park? It’s an exhilarating descent to the ground, with a breathtaking 20 mile vista across London, including iconic buildings such as the Gherkin, St Paul’s Cathedral, Canary Wharf and Wembley Stadium, … Continue reading Want to abseil at the Queen Elizabeth Olympic Park?
Every time you shop online you could be raising a donation for the Nystagmus Network, absolutely free. All you need to do is visit the Easy Fundraising website and click through to the retailer of your choice. All the major ones are listed – and so is the Nystagmus Network. It’s so simple – there’s … Continue reading Sign up to Easy Fundraising for free donations
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?
Maureen tells her own nystagmus success story … I started school in 1945. They didn’t have the pre-school checks they have now. No-one had noticed anything out of the ordinary. I was riding a two wheel bike before I was 4. I used to bump into things and fall off regularly, but nobody saw anything … Continue reading How amazing is Maureen?