We are delighted to announce that we shall be joined on Open Day this year by Shadow Minister for Disabilities, Marsha de Cordova.
Marsha has nystagmus and is severely sight impaired. She recently explained to BBC Radio 4’s Intouch programme how she manages her vision problem as part of her busy professional life.
The photograph is by Graeme Robertson for the Guardian.
Ever wanted to try the London to Brighton cycle run? Well, now you can.
Skyline Events and the Nystagmus Network can make your dream come true.
Apply for your place by clicking this link.
Let us know so we can send you your free Nystagmus Network T-shirt.
Every Friday on our Facebook page we celebrate the achievements of the week’s top fundraiser, feature the story of one of our upcoming fundraisers or signpost you to fabulous and fun fundraising opportunities. So please join us every Friday on Facebook and help us say a huge thank you to all our wonderful fundraisers.
Our fundraisers make it possible for us to continue our important work supporting everyone affected by nystagmus, providing information, raising awareness and funding research. We cannot do any of this without them.
Last week’s Friday Fundraisers were Jemma, Jo, Fergie and Jorja. Please sponsor them if you can and then go and find out about this week’s Friday Fundraiser.
Thank you!
Dr Kong Yien Chin, a clinical scientist working in the Evoked Potentials Clinic at Nottingham’s Queen’s Medical Centre, invited the Nystagmus Network’s Sue Ricketts to view the clinic, meet the team and discuss potential collaboration opportunities on nystagmus research projects.
Sue was very impressed by what she saw. The last time she had stepped inside such a clinic was some 25 years previously, when her baby daughter had undergone VER (visual evoked response) and ERG (electro-retinogram) testing to confirm her diagnosis of congenital idiopathic nystagmus.
Although the appearance of the test materials themselves may not have changed much over the years (Sue well remembers gazing at a flashing checkerboard image as she cradled her daughter), Head of Evoked Potentials, Professor Christopher Degg, explained that new techniques have been developed and refined over the years to increase the depth and precision of the analysis of the readings, providing different information about visual function relevant to patients, including those with nystagmus. The technology involved is firmly at the cutting edge of medical science.
Sue came away with an appreciation of how it can be beneficial for people affected by nystagmus to seek appropriate assessments for best possible understanding of their condition.
Dr Chin commented:”This meeting is an important milestone for the Nystagmus Network and the Evoked Potentials Service in Nottingham. We have the desire to play a significant role in future collaboration with the Nystagmus Network and alongside current and future research groups on potentially life-changing research that will particularly benefit those affected by nystagmus.”
Every Thursday on our Facebook page we publish the latest news on nystagmus research or publish details of new nystagmus trials that you can take part in.
We are currently supporting these trials:
Don’t miss your chance to take part in research and read the latest nystagmus-related news!
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.
