We started national and international Nystagmus Awareness Day, also known as Wobbly Wednesday, back in 2013. But every Wednesday is awareness day on our Facebook page.
This means you can talk about any aspect of nystagmus you choose and ask any questions you like. This is your forum to talk about everything to do with nystagmus.
We will, of course, be celebrating the actual Nystagmus Awareness Day later in the year. See today’s further blog post for exciting news about this year’s theme!
The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day.
Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.
In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.
To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.
Please watch our blog and social media posts for further news.
We call our charity the Nystagmus Network, because it’s very important to us to help people affected by nystagmus to get together for mutual support. There is no better feeling than meeting someone else who has nystagmus themselves or has a child with nystagmus.
To help members of the nystagmus community get together, this year we have declared every Tuesday nystagmus networking day on our Facebook page.
Each week we nominate areas of the UK from our big alphabetical list and encourage people to leave comments, message each other and organise meet ups. Why not come over to our page and see who you could find in your area?
Every Monday over on our Facebook page we focus on a particular nystagmus-related topic to get the week started with a great conversation.
Topics we have covered so far have included null point surgery, driving and nystagmus, talking to you child about nystagmus and whether or not to have cataracts removed when you have nystagmus.
Anyone can join in the conversation and share their thoughts, questions, experience and point of view.
In 2018 we’re looking for people who want to do something amazing. We’ve got lots of opportunities lined up and we’re ready to give you masses of support to follow your dream. So whether it’s a mountain trek to Kilimanjaro you fancy, a London to Paris bike ride or something a bit nearer to home, we’ve got the bucket list adventure for you.
If personal challenges are what floats your boat, try this.
Or if sky dives are more your thing, click here.
To talk to us about how we can achieve your personal goal together and fundraise for the charity at the same time, please contact us here.
Parents often wonder when is the right time to talk to their children about nystagmus and what words to use. Our free to download booklet “Wobbly Eyes” can help. Covering things like going to school, out and about and making friends, the booklet uses child friendly language to help prepare a child for life with nystagmus.
Anyone needing information or support from the Nystagmus Network can now speak to someone on the phone throughout normal office hours. From Monday to Friday, Sue will answer the phone whenever she is available. If she happens to be away from her desk, or in the evenings and at weekends, you can leave a message. Then Sue, Rachel or Sara will call you back.
The number to call is 01427 718093
Alternatively, if time is short, you can continue to use the [email protected] email address for all enquiries, or request support and information through our contact form.
This new service is thanks to BT telecomms engineer, Jason, who braved the falling snow to install our new landline. Thank you, Jason!
Julian Jackson lost his sight in 2010 as the result of an inherited retinal condition. Since then he has become a visual impairment champion. He has worked with a leading eye research organisation and, through his own social enterprise, VisionBridge, campaigned to bring sight loss and the need for more research to public awareness. His work has gained momentum and he is now partnered with researchers, eye health professionals and members of the visually impaired community across the UK.
What is the Big Blind Walk?
Julian is seeking to raise awareness of and funding for sight research, for too long seen as a ‘cinderella’ branch of medicine. He has previously tandem cycled from John O’Groats to Land’s End, but this year he plans to walk back along the entire 1,000 mile route, from the bottom to the top of the UK. He thinks it will take him around 7 weeks.
He will set off from Cornwall on Sunday 29 April, when the BBC1 Countryfile team will be there to film him. If all goes to plan, Julian hopes to arrive in the far north of Scotland by around 22 June.
Why is the Nystagmus Network supporting Julian?
The Nystagmus Network promotes and funds research into nystagmus, but we are only a small charity with limited resources. If we support Julian to raise the profile of vision loss and the need for research, as well as a large pot of money which eye sight researchers can bid for, we can all benefit.
Richard Wilson OBE, Chairman, Nystagmus Network, writes: “The Nystagmus Network is delighted to support Julian and his Big Blind Walk, because we believe wholeheartedly in his mission to raise awareness of sight health and foster innovative research.”
How can I take part?
In support of Julian’s endeavour, the Nystagmus Network is asking members of the nystagmus community simply to get out there and cheer Julian on. If you live close to Julian’s route, you can follow his interactive map to find out when he’s passing by. Why not walk a section with him? He would be very glad of the company.
If you’re planning to walk with Julian, please let us know and we will send you a Nystagmus Network T-shirt to wear. It will make it easier for you to meet other people affected by nystagmus in your area, help Julian publicise his walk and raise awareness of nystagmus, too.
A thank you from Julian
“I’m so grateful to the Nystagmus Network for not only supporting my Big Blind Walk to improve awareness and understanding of the social, economic and psychological impact of sight loss amongst a growing number of the UK population, but also in promoting and raising money for eye research, which I believe is one of the most underfunded areas of medical research and certainly one of the best kept secrets in the UK!”
Thank you for your support.
Research participation opportunity
If you use audio description services to watch TV, you could help Victoria, from the University of Seville, with her survey of VI friendly TV.
Please read on …
My name is Victoria García-Prieto and I work at the University of Seville (Spain). I am currently conducting research on accessible television for people with disabilities. I have designed a brief online survey to find out what people think of subtitling, audio description and sign language services on the BBC.
To thank you for your participation, at the end of the survey please leave your email address and you will be put into a draw to win two hotel nights for two people. Your answers will remain totally anonymous.
Victoria has promised to share with us her research findings.
