Nystagmus research – a progress report

The Nystagmus Network is funding equipment and testing to underpin nystagmus research taking place at Cardiff University School of Optometry and Vision Sciences, in collaboration with the genetics research team at the University of Southampton. On behalf of the Cardiff team, Nikita Thomas reports: “Our study attempts to investigate how visual function in Idiopathic Nystagmus … Continue reading Nystagmus research – a progress report

Celebrating National Sunglasses Day!

As photophobia is a frequent accompaniment to nystagmus and ocular albinism, we’re happy to join in a day of celebrating sunglasses and raising awareness of the importance of protecting your eyes, whether you have nystagmus or not, from damaging UV rays. We’re enjoying some beautiful, warm sunny weather across the whole of the UK right … Continue reading Celebrating National Sunglasses Day!

How amazing is Bradley

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

2018 exams access arrangements feedback

Our friends at VIEW need your help. VIEW is a registered charity, which represents Qualified Teachers of Visually Impaired children and young people (QTVIs). It exists to help support the education, development and opportunities of children with vision impairment. They would like to receive feedback from schools and services on their experiences, both good and bad, of access arrangements … Continue reading 2018 exams access arrangements feedback

Want to abseil at the Queen Elizabeth Olympic Park?

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?

Sign up to Easy Fundraising for free donations

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

An inspiring meeting with David Katz

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

Charity trustees meet Marsha

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

How amazing is Sara?

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?