If you or someone in your family has nystagmus, then make sure you meet your ECLO (Eye Clinic Liaison Officer). You can ask for them the next time you visit the clinic, or find their details on your local authority’s ‘local offer’ page, under visual impairment or sensory services. Alternatively you can search the RNIB’s … Continue reading Do you know your ECLO?
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 … Continue reading It’s Tuesday – that’s Nystagmus Networking day on Facebook!
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 … Continue reading Monday Focus on Facebook
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 … Continue reading Explaining nystagmus to a child
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. … Continue reading Nystagmus Network launches new information and support line
Would you like to participate in a study researching the support and information available for people with Nystagmus and their families? The team based at the University Hospital Southampton are running a short study – if you would like to get involved please get in touch by completing the form below. By completing the form you … Continue reading University Hospital Southampton Questionnaire Study 2017