We are sorry to share the sad news that Richard Wilson, Chairman of the Nystagmus Network from 2011 to 2019, passed away over the Easter weekend.
Richard’s contribution to the work of the charity and the nystagmus cause is immeasurable.
His most notable achievements include our first ever clinical training day, the introduction of an annual UK nystagmus research workshop and, of course, Nystagmus Awareness Day, which we first celebrated nationally and internationally back in 2013.
Of that day Richard himself said:
“What a momentous day this has been. I am hugely proud to hold the chairmanship of the Nystagmus Network at this time. We have done something very special today. Brilliant people doing truly brilliant things. Perhaps we should do it again? But for now, let us just reflect on this success and sleep well knowing we have changed perceptions and some attitudes.”
Just a few days ago Richard urged charity trustees and staff to “Keep doing all the great stuff for the Nystagmus Network! And keep smiling.”
Thank you for everything, Richard, and we promise we will! – from all of us at the Nystagmus Network
A Nystagmus Champion is someone who goes above and beyond to raise awareness of the condition, to raise funds or generally make life better for people living with nystagmus.
The Nystagmus Champions of 2022, announced at our virtual Open Day on 1 October are:
Lucy
Mum to Maisie and partner to Myles, we’re sure it’s no surprise to them that Lucy has been nominated as a Nystagmus Champion for her baking skills. We’re no Paul or Prue, but we know that there must be something very special about Lucy’s cakes and about Lucy, herself. Earlier this year, Lucy took on a 12-hour bake-a-thon, making everything from Lemon Drizzle cake to chocolate brownies. She did get Maisie’s nursery to join in, too, but baked most of the cakes herself, making full use of her two ovens at home. She raised a lot of awareness and a phenomenal £2,000. Well done, Lucy! And thank you!
Khalil
Back in June we took a call from an enthusiastic young man. He said he’d like to take part in Nystagmus Awareness Day and could we please send him some T-shirts. This was Khalil. As we chatted, he revealed that he had nystagmus himself. He also shared that he was the Assistant Manager of the Leicester branch of Specsavers. What a tremendous achievement! Khalil has been nominated as a Nystagmus Champion of 2022 for persuading his entire staff team to wear Nystagmus Network T-shirts and wristbands on Nystagmus Awareness Day and sharing the photos across the local press and social media. Thank you, Khalil. We are so grateful for your support.
Tracy
2022 was not the first time that Tracy chose to do something energetic for the nystagmus cause. But this time it was particularly strenuous. She took part in the full Ironman. If you’re not sure what that is, it’s a 2.4 mile swim, followed by a 112 mile bike ride, followed by a 26.2 mile run. Yes, that’s right. That last bit is a marathon! Despite picking up a knee injury in training, Tracy completed the challenge and raised £1,500 in the process, making her family and especially her son, Alfie, very proud indeed. Thank you, Tracy for all the energy. You are a Nystagmus Champion.
Charlie
7-year-old Charlie has nystagmus. He’s also a huge football fan and one to watch for the future, we think. When his cub team were looking for sponsorship for their kit, young Charlie decided to write to his Mum’s bank. They would have plenty of money! Luke, the bank manager took part in a triathlon and raised the sum needed, but then he asked Charlie to nominate a charity whose logo should appear on the kit. And this is how the boys got their Nystagmus Network sports tops. And don’t they look smart! We’re not sure how the tops have helped with goal scoring, but we’re sure that Charlie has a stellar career ahead of him. Congratulations, Charlie.
It’s fitting that our final nystagmus hero of 2020 is someone who has been working tirelessly all year looking after some of our most vulnerable people.
Zoe is a care supervisor and head house keeper in a care home, working over 40 hours a week. She was born with nystagmus and optic atrophy. She struggles every day with eye pain and headaches and trying to concentrate when her eyes wobble a lot, but she works hard and does an amazing job.
She sometimes feels alone, because she’s never met or spoken to anyone with the same condition. A lot of us can relate to that.
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). Nominated for her innovative work in perimetry, we’re sure that Nikita has a brilliant nystagmus research career ahead of her.
And now we’re not the only ones to think so. You can read all about Nikita’s nomination here: https://nystagmusnetwork.org/congratulations-nikita/
Congratulations, Nikita!
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
Thanks to her book ‘Can I tell you about nystagmus?’, children and their parents feel better able to explain nystagmus to others. In 2020, with the country in lockdown and schools closed, Nadine came up trumps again with advice and tips for parents struggling with homeschooling.
Nadine, you’re a hero, but you’re also human, just like the rest of us.
Thank you!
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time! Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
What can we say about Mike that hasn’t been said already? He endured so much for the nystagmus cause this year – including very wet feet, a constantly rumbling tummy and often only the company of chickens!
But Mike still walked 3000 miles to raise £2,500 for the Nystagmus Network. A-m-a-z-i-n-g!
And after all that he even dropped in to our Night in with the Nystagmus Network to entertain us all. Thank you, Mike.
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment.
Thanks to the work of Dr Melvyn Thomas and the research team at the University of Leicester there is now a validated method of predicting prognosis in children and infants with infantile nystagmus.
This development answers the question most parents of newly diagnosed babies have: How well will my child be able to see?
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
Inspired by her 2 younger sisters, who both have nystagmus, final year geography student, Libby chose to explore the experiences of young visually impaired adults in their local space and environment and the impacts on identity formation for her dissertation.
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
Living with the triple whammy of nystagmus, myopia and astigmatism, Julia is an accomplished musician. She also sings in choirs, which often happens in poorly lit churches.
In her blog post, Julia regaled us with hilarious stories of missing her applause and mistakenly stealing someone else’s limelight all because she cannot see the conductor. She also shared that her young child now helps her with the bus numbers. Thank you, Julia, for sharing your lovely insight into the life of a parent with Nystagmus. You can read more of Julia’s musical adventures here: https://nystagmusnetwork.org/julias-musical-adventures/
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
Josh can’t see rain – can you? Josh was born with nystagmus and ocular albinism, but he hasn’t let that hold him back. Josh has been a primary school teacher for 7 years, completed his masters, got grade 8 piano and regularly sings in City of Birmingham Choir at Symphony Hall.
Josh has some very reassuring words for parents: “If you have a child who has just been diagnosed with nystagmus they will be fine. I promise you that you will worry about it and notice it more than they will and they’ll constantly surprise you with how well they cope.”
For his wisdom alone, Josh is a hero, but what he told us about rain made everyone take notice. He said: “I only found out a couple of years ago that people can see rain. I’d always assumed it was invisible to everyone.”
Thank you for sharing, Josh.
This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!
Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020
