This Thursday, Sue from Nystagmus Network, will be attending the annual VIEW conference for teachers and specialists in educating visually impaired children and young people. The event takes place over two days in Birmingham.
Delegates will find Sue in the exhibition area, eager to demonstrate the support and information the Nystagmus Network has to offer to schools staff.
Last Friday Sue attended the PSS very first Sight Loss conference in Doncaster on behalf of the Nystagmus Network. The day was attended by around 100 people with visual impairment, their family members and friends, carers and health professionals.
It was an opportunity to hear from senior medical and research specialists as well as listen to the personal stories of people living with sight loss.
One speaker, Mr Sid Goel, Consultant Ophthalmic Surgeon, spoke about the advances in cataract surgery, suggesting that cataract removal is always a good idea, even if the patient already has reduced vision due to other causes or conditions.
Sue took the opportunity to ask specifically about patients with nystagmus, a question we often hear from members of our community. Mr Goel was able to provide reassurance that the topical anaesthetics used during the procedure to prevent the sensation of pain also serve to numb the muscles controlling eye movements, which means that the surgery can go ahead without fear of eye movement.
Concerns about surgery and nystagmus are, of course, understandable. We have heard from several people with nystagmus who have had cataracts removed in adulthood, however. They report that their former vision and, in particular, colour perception is restored afterwards to previous levels and they are naturally delighted. Mr Goel would agree. Similarly, babies born with congenital cataracts usually have these removed in early infancy in order that the sight can continue to develop.
Please consult carefully with your surgeon before embarking on any surgery.
We are just finalising details of our annual Open Day 2018. We shall once again be in central Birmingham. The date is Saturday, 29 September. The venue is the same as last year, the MacDonald Burlington Hotel, across the road from Grand Central.
We already have some very exciting speakers lined up. We will also be joined by teams of research scientists from the leading nystagmus centres across the UK. Each team will have the opportunity to present their latest research findings and recruit willing participants to new studies and trials. Delegates will also have the opportunity throughout the day to speak one-to-one with research and medical experts.
Education and benefits experts will be on hand to answer your individual questions.
There will be bespoke sessions for adults with CN or AN, parents of children with nystagmus and, not forgetting, the children and young people themselves.
Throughout the day there will also be inspirational presentations, interactive workshops and fun activities for everyone to attend together, to make sure that everyone gets the most from their day.
We look forward to having you with us.
Priority booking for members of the charity will open shortly. Members will be notified personally.
We are delighted to announce that David Katz, the internationally acclaimed photographer, will be joining us as our special guest speaker at our annual Open Day on 29 September.
David was with us all in spirit last year, of course, when we were honoured and privileged to have been granted permission to premier his amazing film, Through my Lenses. In the film David reveals that, throughout his success behind the camera, he managed to conceal the fact that he is actually registered blind. He speaks personally and very movingly about his upbringing, the gift of a first camera from his father and the support from his mother, in particular, who taught him a lesson that will stay with him for life – there is no such word as can’t.
David is currently enjoying yet another official photography assignment, one which we know will hold a very special place in his heart. He is in Pyeongchang, covering the Winter Paralympics.
We look forward to seeing David, again, in Birmingham on 29 September.
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.
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.
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.
If you would like to take part in a family event especially for children and young people who have a visual impairment, Nystagmus Network is offering you the opportunity to join a special London theatre experience for families.
The Little Match Girl and other happier tales
For full details and how to book, please click the link to Mousetrap Theatre Projects.
