Nystagmus Awareness Day – Page 14

Nystagmus Awareness Day – for snow men!

Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or skiing with us at the Snow Dome, Milton Keynes.

Jamie Fuller, from the Outspan Rebels VI ski team, is organising the first of two amazing Nystagmus Network Snow Camps. It takes place on Sunday 17 June.

There will be skiing and sledging for adults and children with nystagmus, their fully sighted parents, siblings and friends. Everyone is welcome to come along. Each session costs just £10 per person.

Charlotte Evans MBE will be there on the day along with Jamie and the Outspan Rebels, themselves. There might even be a few very special visitors!

It is sure to be a great day. So please join us if you can. To register your interest, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus in the garden

To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting!

Sue and her husband have been members of the charity since their daughter was diagnosed with nystagmus in 1991, during the first few weeks of her life. Sue has served as a trustee, volunteer parent adviser and is now an employee.

If you can’t make it to Sue’s garden, please consider making a donation to her Justgiving page instead. Thank you.

If, like Sue, you would like to open your garden for Nystagmus Awareness Day, you can download a free poster or flyer. For more details about this ‘nystagmus in the open‘ event or for advice on how to organise your event, please call Sue on the charity information and support line: 01427 718093.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Every Wednesday is Nystagmus Awareness Day on Facebook

We started national and international Nystagmus Awareness Day, also known as Wobbly Wednesday, back in 2013. But every Wednesday is awareness day on our Facebook page.

This means you can talk about any aspect of nystagmus you choose and ask any questions you like. This is your forum to talk about everything to do with nystagmus.

We will, of course, be celebrating the actual Nystagmus Awareness Day later in the year. See today’s further blog post for exciting news about this year’s theme!

Nystagmus Awareness Day 2018

The Nystagmus Network is delighted to post some exciting news. In 2018 we are declaring 20 June the new permanent date for Nystagmus Awareness Day.

Since 2013, we have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.

In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.

To mark this change and encourage as much participation as possible, we will be raising awareness of nystagmus under the banner ‘we need to talk about nystagmus’ and encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.

Please watch our blog and social media posts for further news.

Broadway swimming club joins #nystagmusbigswim

We’re celebrating today the huge achievements of Lucie Wood and her family in support of Wobbly Wednesday 2017 (national and international Nystagmus Awareness Day) and the #nystagmusbigswim.
Lucie’s daughter has nystagmus. She, her sister and their 2 cousins decided to take part in the #nystagmusbigswim. When they asked their swimming club, Broadway ASC in Oldham, if they could ‘borrow’ a lane, the committee decided to get the whole club involved. Thanks to Lucie and her family the club raised £500 for nystagmus research and all those families now know about nystagmus.
The picture shows Lucie’s Mum, Pat, receiving the cheque, on behalf of the Nystagmus Network, from Danny Wood, committee member at Broadway ASC .
HUGE THANKS to Lucie, her family and Broadway ASC.