If you’ve never been to a big nystagmus meet up before, you really should try it.
The Nystagmus Network has been hosting the meet ups in various towns and cities across the UK since 2023. It’s your chance to meet up in person with other people living with nystagmus in your area. The next one is in Leeds on Saturday 20 September.
Who goes to a big nystagmus meet up?
People living with congenital or acquired nystagmus, families and their children, teachers, clinicians, researchers – everyone interested in nystagmus is welcome. You never know who you might meet!
What happens at a big nystagmus meet up?
There’s always a warm welcome. Then you get to hear some talks from guest speakers about the latest research or how people living with nystagmus are achieving great things in life. Then there’s a whole session on living well with nystagmus where we share hints and tips about benefits, getting help at school or at work, how to find your local sight support services, VI friendly activities and events.
What about the children?
There’s always an activity area (also called the ‘messy’ table) for children to meet, chat and try out their latest artistic designs. Sometimes there’s a competition, too!
How much does it cost?
Attending a big nystagmus meet up is free if you’re under 5. For everyone else we keep the cost to a minimum, usually around £10. This covers the cost of the delicious buffet lunch we provide and also buys you a free raffle ticket. Did we forget to mention the raffle?!
What do other people say about the big nystagmus meet ups?
“The best bit is meeting other people with nystagmus just like me.”
“Everyone is so welcoming and friendly.”
“It was the first time I’ve ever met someone else who has nystagmus. It was emotional.”
Book your place for the big nystagmus meet up – Leeds here
