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.
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 …
What a special and successful day this first ever international nystagmus awareness raising day has been 🙂
On 21st January 2011, a lady called Jo wrote a post on her “The Shifty Eyes Blog” that touched our hearts and gave us hope when Jack was first diagnosed.
On Wednesday 6th November 2013, Nystagmus Network is organising the first ever International Nystagmus Awareness Day.
In the Back to Bounce post on 13th May last year I said I met a lady who works in the Sunderland Children’s Sensory team for Visual Impairment, and she offered to do an assessment of Jack at our home after meeting at the Bounce session.
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.
I made it :-). What an amazing and unforgettable experience. Here are some of the highlights;