Many people with aniridia also have nystagmus, and this year’s Nystagmus Awareness Day will take place on 20th June – the day before Aniridia Day!
The Nystagmus Network have celebrated Wobbly Wednesday in November since 2013, but this year they have permanently moved it to the summer. So the main event will be on Wednesday 20th June, and the few days either side will be known as Wobbly Week.
Sue Ricketts, the Nystagmus Network’s Information and Development Manager, told us about the charity and the awareness day at our London conference in April. You can see the video of her presentation below, along with further information about the awareness day.
The theme of this year’s Nystagmus Awareness Day is “nystagmus in the open”. Everyone is being encouraged to make the most of the time of year by getting outside and having fun together, raising awareness and funding in the process.
Activities will include barbecues, garden open days, sponsored cycle rides, sports days and lots more, so there will be something for everyone to enjoy.
Sue Ricketts will be opening her Lincolnshire garden to the public on Sunday 24 June. She said:
“I look forward to welcoming as many friends and neighbours as possible into my garden for Nystagmus Awareness Day. It will mean there are a few more people who know about nystagmus and where to find support and information.”
Schools and hospitals are also getting involved, with reception displays, cards and leaflets for visiting patients, and lots of bunting and balloons.
In the lead up to the big day, the charity is running its “how amazing are you?” campaign, sharing stories of adults and children who have achieved great things despite having nystagmus, or maybe even because they do.
Nystagmus Network Chairman, Richard Wilson OBE, said:
“We are very excited about the new date. I have a feeling this is going to be one of the biggest Nystagmus Awareness Days ever.”