This year, on Wednesday 5th November it’s the world’s second international Wobbly Wednesday – a very special day for all of us who have involvement with nystagmus. The day is dedicated to raising awareness of the condition and so far celebrations are set to go with a bang!
Back in June, Jack and I went to our third Nystagmus Network Open day. This year it was in Leicester, and there was a great line up of sessions including a speech by Sarah Caffrey, a paralympian with nystagmus and achromatopsia.
Jack started school nursery in January, and attends five mornings a week.
Following our last post about Wilson using an I-Pad to help him at school, his Mum recommended more education resources on the RNIB (Royal National Institute for the Blind) website. We’ve been impressed by the up to date content across the site, and here are links we’ve found particularly useful/interesting so far …
Earlier today Mum of 10 year old Wilson sent us a link to this inspiring RNIB (Royal National Institute for the Blind) video explaining how technology is helping her son with nystagmus at school.
What a special and successful day this first ever international nystagmus awareness raising day has been
On Wednesday 6th November 2013, Nystagmus Network is organising the first ever International Nystagmus Awareness Day.
At the Nystagmus Network Open Day, a speaker on genetics explained that with nystagmus the most common genetic pattern is X linked, but it can also be autosomal recessive or autosomal dominant. It made us curious to find out more about our situation and this post explains what we’ve learned …
On Saturday 20th October I went to my second Nystagmus Network Open Day which was held in Manchester this year. The purpose of the event is so people can meet and share experiences. It’s also a great opportunity to find out more about current research and ask questions to medical experts.
We highly recommend the Noah (National Organization of Albinism and Hypopigmentaion) “How we See” video from Amy’s recent blog post Noah Conference How We See on 16th July 2012.