Last year the charity held its first ever fundraising skydive. Luke Sargent jumped out of a plane while his young son watched proudly. Imagine that!
Now we’ve signed up with UK Skydiving Adventures so anyone can have a go. Simply follow the link to the website and get yourself signed up.
It’s just one brave leap from a plane, but it could be a huge step forward for nystagmus research!
Thanks to John Gray and his Dorset golf club for their generosity, the Nystagmus Network will be able to continue to invest in research. John had no hesitation in nominating the Nystagmus Network as his captain’s charity of the year when he took up the reins as captain of Crane Valley Golf Club in 2017.
His choice was in honour of his young grandson, Caleb, also known by everyone as CJ. CJ was born with nystagmus. John’s goal was to raise awareness of the condition throughout the membership and beyond and also to raise funds for the charity.
John achieved both of these things, even meeting another family with a child who has nystagmus along the way.
CJ was there to help Grandpa with all the big club occasions, too. The highlight of the year was a fun day with a Pirates of the Caribbean theme and disco in the evening, with CJ as the guest of honour.
John’s year as captain ended this month with the AGM and presentation evening. Nystagmus Network trustee, Peter Greenwood, himself a keen golfer, went along to receive a cheque for £5,114.50
Thank you to everyone who contributed: Crane Valley GC members, friends and family, to CJ for helping and, especially, to John.
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.
If you’re looking for a challenge and would like to help this charity raise funds, why not sign up for one of our free places in the London Vitality 10k on 28 May?
All we ask is that you set up a Justgiving page for your sponsors, agree to raise at least £100 for the charity and wear your free Nystagmus Network running vest to help us raise awareness.
Interested?
Please contact us here.
Thank you for choosing to apply to the Nystagmus Network for one of our London Marathon places. To do so, please complete the short form below.
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This week the video blog at the Nystagmus Network features our very own Sue!
The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.
Our latest video for our blog introduces Wobbly Wednesday, the annual awareness raising day for nystagmus!
The video features some of our trustees, including our founder and chairman explaining why the Nystagmus Network is so important.
Jon and Rachael Sweeney organised a charity rock and roll night at their local social club on Saturday 29 October. Their son, Oliver, has nystagmus. They wanted to raise money for the Nystagmus Network to give something back after the support and information they received. Jon says:
“I had never heard of Nystagmus until our Ollie came along but with the help of The Nystagmus Network we have a better understanding of this condition.”
Not only did they invite all their friends and family to come along for the party, but Rachael set about contacting local businesses and theatres asking if they’d contribute a raffle prize.
“I wanted to raise as much money as possible for this charity.”
The couple set up a Justgiving page here: https://www.justgiving.com/fundraising/jon-sweeney1 and on the night itself raised a whopping £1,403 in cash.
A huge thank you to Rachael and Jon and all their supporters.
On Saturday 29 October young Research Orthoptist, Daniel Osborne, kicked off a whole raft of Wobbly Wednesday activities at the Southampton Eye Unit in real style by riding a 12 mile route around the town on his unicycle.
Fuelled by dates, flap jack, fed to him at regular intervals by his stalwart outrider, Kathryn Greenhalgh, who rode the entire distance with him on a bicycle, as well as a desire to help idiopathically visually impaired children, Dan cycled from Winchester to Southampton to raise money for the Nystagmus Network and awareness of nystagmus. His journey covered some 20km and took just under 3.5 hours.
Dan sends out a special thank you to everyone who met him at the finish line and a very big thanks to everyone who has donated to his Just Giving page. So far Dan has already raised almost £500 but the page is still open so anyone wishing to donate can do so here https://www.justgiving.com/fundraising/Daniel-Osborne5
There will be lots more Wobbly Wednesday events happening in the Eye Unit this week, so why not go along to join in the fun alongside the Nystagmus Network’s Chairman, Richard Wilson, if you’re in the area.
Our video this week focuses on Wobbly Wednesday and why your support is so important! It helps us raise awareness of nystagmus and make it the topic of discussion for the day.
