Free digital skills, information and well-being event for families with visually impaired children Saturday 28th March 1.30-4pm Swansea University Health and Wellbeing Centre To book a place contact Sue Neale Eye Clinic Liaison Officer Tel 01792 200390 Mobile 0790 852 7522
Parent carer voices are essential to help shape the services they need for their children and young people. The East Sussex Parent Carer Forum would like you to get involved.
A guest post. A couple of years ago, I wrote a piece about being a parent with nystagmus of a child without. That child is now old enough to tell me if an approaching bus is a three-and-a-four-and-a-one or a two-and-a-nine, and I consider myself to be winning at life. My second child appears to … Continue reading Julia’s musical adventures
The Nystagmus Network has launched 3 brand new official Facebook groups this week to help members of the nystagmus community come together to share their experiences, their problems and their successes and offer each other help and encouragement when it’s needed. All three groups have Nystagmus Network staff members Sue, Sara and Debbie as admins … Continue reading Our new Facebook groups
Our lovely knitting volunteer, Lynda has just delivered a new supply of Nystagmus Network mascots for our online shop. Each mascot represents a child who has nystagmus and wears a warm woolly hat and scarf against the stormy weather. Every mascot is individual, just like real children. All profits from the sales of the mascots … Continue reading Thank you, Lynda
It’s thought that some types of nystagmus are caused by a genetic spelling mistake. Although nystagmus is not classified officially as a rare disease, we can all take part in genetic research to help researchers find out more. The NIHR BioResource – Rare Diseases has been established to identify genetic causes of rare diseases, improve … Continue reading Volunteers needed
Delegates at 100% Optical learned about progress on refining the way an eye movement disorder is identified in babies Professor Jon Erichsen from the University of Cardiff gave a presentation on infantile nystagmus to eye care professionals at the recent 100% Optical event (ExCeL London, 25–27 January). Professor Erichsen highlighted that in the condition there … Continue reading Improving the infantile nystagmus test
We are delighted to announce that Professor Alison Leary MBE has joined the Nystagmus Network as a trustee. After spending 10 years in science Prof. Leary undertook an RN diploma at The Nightingale School at St Thomas Hospital (now Kings College London). She attained a Masters in Biomedical Science (Haematology) and worked in acute Haematology … Continue reading Alison joins the Nystagmus Network
Common misconceptions about nystagmus A team of nystagmus researchers in the UK have recently shown that there is significant variation in the way people with nystagmus are supported and given information, from diagnosis to treatments and beyond. They are now interested in studying public perceptions of nystagmus and are developing a similar questionnaire for both … Continue reading Nystagmus researchers need your help
The Nystagmus Network has appointed Daniel Williams, sight loss campaigner and founder of Visualise Training and Consultancy, to its committee of Trustees. Chair of the charity’s trustees, Tim Cuddeford said: “We are delighted to welcome Daniel to the committee as he brings a comprehensive overview of the sight loss and optical sectors and first-hand knowledge … Continue reading Daniel joins the Nystagmus Network
