28 October 2015
Source: Nystagmus Network
A Wobbly Wednesday walkaround and a school talk about nystagmus is how Connor Beyers will celebrate his thirteenth birthday. Connor Beyers was born with albinism and nystagmus which means his eyes are continuously moving, making them appear to wobble. Nystagmus affects around 1 in 1,000 people.
On his birthday, Sunday 1 November, Connor is joining his mum, family and friends in a 10K walk around Glasgow. On Wobbly Wednesday, 4 November, he will overcome some of the difficulties nystagmus causes him to give a presentation at his school telling other pupils what it’s like to have wobbly eyes.
Isabell Beyers, Connor’s Mum, said: “As a mother of a child with nystagmus I cannot tell you the frustrations we all go through on a daily basis but with Nystagmus Network and Wobbly Wednesday I’m sure more people will be aware of this condition that is to a lot of people unheard of.”
Walks and talks are just two of the ways that supporters of Nystagmus Network are celebrating Wobbly Wednesday across the UK, on Wednesday 4 November. Jelly is the theme of the day in schools looking for a fun time. Teachers at Winterton, Scunthorpe have volunteered to be put in the stocks so that pupils can throw jelly at them.
Richard Wilson, Chairman, Nystagmus Network said: “You have to admire the courage of youngsters like Connor who openly share with their peers what it’s like to have nystagmus. Throwing jelly at Teacher almost makes me wish I was back at school. I am so impressed with the way people have responded to the call to raise awareness of nystagmus and have fun on Wobbly Wednesday.”
Raising awareness is an important part of the work of Nystagmus Network. Giving help and advice across a wide age range from parents of young children starting nursery, to teens like Connor. NN produces guides for parents and teachers and gives training to specialist teachers so they have a better understanding of nystagmus and how best to help pupils with the condition.
Hospitals, schools and parents can download posters from the Nystagmus Network website http://www.nystagmusnet.org/cms/index.php/component/phocadownload/category/23-2015-downloads you can find Wobbly Wednesday on Facebook https://www.facebook.com/groups/WobblyWednesday/
NN is the UK’s leading charity for nystagmus it provides support and information as well as encouraging and funding research and raising awareness of the condition. For more information about Nystagmus Network, contact John Sanders, Executive Manager, email: firstname.lastname@example.org Tel: 029 2045 4242. Helpline: 0845 634 2630, email@example.com website: http://www.nystagmusnet.org