It’s Tuesday – that’s Nystagmus Networking day on Facebook!

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?

Monday Focus 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 can join in the conversation and share their thoughts, questions, experience and point of view.

Nystagmus Network launches new information and support line

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!

 

University Hospital Southampton Questionnaire Study 2017

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 are giving us permission to pass on your details to the relevant research team.
Thank you.