This week whatCharity hears from Sue Ricketts, Executive Information and Development Manager at Nystagmus Network, on what members of the public can do to support Nystagmus awareness. We may all be staying at home, but we can still mark national and international Nystagmus Awareness Day. Here are just some of the ways you can get involved.
How amazing are you?
In the run up to Nystagmus Awareness Day 2020, we are once again asking you to share your amazing nystagmus success stories. Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus. Let’s make 2020 even more amazing! Email your amazing nystagmus stories, plus photo, please, to firstname.lastname@example.org.
Our wobbly photography competition – judged by David Katz
We want to raise as much awareness of nystagmus as possible this year and make sure that everyone has a chance to take part, so we’re running our wobbly photography competition: The View From My Window
We know that lots of people who have nystagmus are also keen photographers. Most notably, of course, is internationally acclaimed photographer, David Katz.
David revealed only in recent years, in his film “Through my Lenses” that he has ocular albinism and nystagmus and is actually registered blind. Nevertheless he has enjoyed a stellar career in photography and has created some of the most iconic press images.
When we asked him to judge our competition, David said “I would be absolutely delighted and very honoured to judge the Nystagmus Network competition … It has constantly amazed me since making my story public how many of us with VI are into photography.”
Whether you have nystagmus or not, whether you have the latest camera or just a phone, and wherever you are in the world, you can take part. Photographs must be your own work, be taken from a window at your home, in high resolution, copyright free and in landscape format. They should not show any people. Email your entry to email@example.com.
Our Wobbly Quiz
The Nystagmus Network is running a Virtual Quiz Night every Saturday at 7pm throughout lockdown. On Nystagmus Awareness Day, 20 June, the quiz promises to be our biggest and best yet. There are cash prizes for 1st, 2nd and 3rd places. So what are you waiting for? Get everyone signed up now! Sign up for the quiz here.
Nystagmus is …
Our fabulous new publication, Nystagmus is …, inspired by the wonderful Roger, will be launched on Nystagmus Awareness Day 2020. The booklet is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time people can read what it’s really like to have nystagmus by the people who really know.
Nystagmus is …will be available FREE from our online shop on 20 June 2020, but you can pre-order your copy NOW. Simply email us at firstname.lastname@example.org.
Home school for Nystagmus Awareness Day
We have loads of teaching and learning materials available to help mark Nystagmus Awareness Day. There are posters to colour, bunting to make, a PowerPoint presentation, a lesson plan and our booklet especially for children ‘Wobbly Eyes”. Find your free to download materials here.
Lockdown doesn’t stop us! Don’t let it stop you! Especially not on Nystagmus Awareness Day! Find out about our lockdown fundraisers here.
Why do we need Nystagmus Awareness Day?
Here at the Nystagmus Network we raise awareness of the condition every single day of the year, because we believe that the more people who know about it the better. It means that adults and children who have nystagmus will get the help, support and services they need in education, employment, health, mobility and leisure and everyone affected will enjoy a better quality of life.
Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that we are here and our voices need to be heard. Every time you take part in Nystagmus Awareness Day or tell someone what you’re doing and why, that’s one more person who understands what nystagmus is.
Every pound you raise or donate helps the Nystagmus Network support our research teams across the UK to investigate this hugely complex condition, to find better diagnosis, treatments and continue to work towards prevention and cure.
Please take part in Nystagmus Awareness Day 2020. Thank you for your support.
Sue is the Executive Information and Development Manager at Nystagmus Network, since 2018. She has been associated with the charity since 1991 when her daughter was first diagnosed with congenital nystagmus at 9 weeks old. Her email is email@example.com.