nystagmus in the open – Nystagmus Network

Well done, Simon! He did it!

Simon jumped out of a plane for the Nystagmus Network this morning and has raised over £1,000 for the charity!

Fresh back from a family holiday, Simon took to the skies earlier this morning, courtesy of the Red Devils Parachute Regiment Free-fall Team.

Simon’s sky dive was watched by friends and family, his wife, Sara and their children, including son, Charlie, who has nystagmus.

Congratulations Simon!

You can still SPONSOR SIMON HERE. Thank you!

If you’d like to leap from a plane for nystagmus, get in touch today!

Thank you, King Cross Surgery!

The Nystagmus Network is hugely grateful to King Cross Surgery in Halifax for their amazing support on Nystagmus Awareness Day 2018.

Practice Manager, Heather, whose 8 year old son has nystagmus, says:

“The Network was and is an invaluable resource to us as new parents, to understand his condition and how it may affect him as he grows.

At the start of 2018, the Practice’s Patient Participation Group (PPG) agreed a number of charities it would support throughout the year. They agreed that Nystagmus Awareness Day on 20 June would be the first.

Members of the PPG drummed up support from local businesses to donate raffle prizes and we held a bake sale for the Wednesday itself. We had 15 raffle prizes ranging from a £30 Tesco voucher, pamper hamper and produce hamper to jewellery, wine and chocolates. Staff and patients alike bought tickets for the raffle (£1 each) and this was drawn last Friday.

The Bake Sale was very successful. We used the resources sent from the Network to promote awareness of the condition and I spoke to patients about it when they visited the stall. We raised £247!

We put up a small display opposite the reception desk to promote the raffle and the Network. A patient who has nystagmus was so impressed with this he took a picture and said it was the first time he’d seen anything about nystagmus in a health care setting! The need for raised awareness is clearly there.

Other practice managers around Calderdale contributed to the raffle and a couple of them will be holding similar events in their practices to raise more awareness and funds to support the great work the Network does.”

THANK YOU, Heather and everyone involved!

Nystagmus in the open and the Big Blind Walk

On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk?

On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 John O’Groats Trail. If you can be there to cheer him on, please let us know and we will send you a free Nystagmus Network T-shirt to wear.

Julian is walking to raise £300,000 for sight research. That will be good for all of us. He deserves our support.

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.