nystagmus heroes – Nystagmus Network

Richard speaks from a podium, wearing a white Nystagmus Network T-shirt.

Thank you, Richard

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

Remembering Richard

You can click here to read more about Richard’s achievements, share your memories and make a donation to nystagmus research in his name on a special Justgiving page.

Nystagmus Champions of 2022

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

A group of people wearing Nystagmus Network T-shirts standing with their backs to the camera outside a branch of Specsavers.

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.

A row of people stand outside Specsavers wearing Nystagmus Network T-shirts.

Leicester optician puts nystagmus in Focus

Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes

When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry.

Now, aged 21, and assistant manager at Specsavers Leicester, Khalil wants to raise awareness of nystagmus, the condition he has lived with for most of his life, alongside building a career in optics.

On Nystagmus Awareness Day 2022, Khalil and his entire staff team donned Nystagmus Network T-shirts and wristbands to raise awareness of nystagmus and support the work of the charity.

For his tremendous support, raising awareness of nystagmus and to honour his career success, the Nystagmus Network has nominated Khalil one of the ‘nystagmus champions’ of 2022. Join us to celebrate Khalil and all the nystagmus champions of 2022 at Open Day.

Khalil’s inspiring story has been told in local press articles in print and online.

Read a Leicester Times article online here

Hands raised in the air in silhouette against a blue sky.

Volunteer for us!

The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey?

If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like to provide IT support, flex your digital skills, help with fundraising, manage our online shop and post out orders or organise some local get togethers, please get in touch. Thank you.

Email us at [email protected]

Hanni negotiating a rock with two walking poles on Scafell Pike.

Hanni’s nystagmus story

Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words:

When I was diagnosed with nystagmus in October 1987, my parents were told 3 things: I wouldn’t drive, I wouldn’t go to mainstream school and I wouldn’t ride a bike. Devasting news for first time parents. But wow, have I proved those doctors wrong!

Not only did I go to mainstream school, I achieved 10 GCSEs, 4 A Levels and a 2:1 BA (Hons) in Primary Education. I secured my first job in a Montessori nursery (yes, there were lots of turned down job applications along the way, but determination got me through) and I then went on to complete a Diploma in Montessori Early Childhood and Pedagogy. My greatest achievement during this time was leading an Outstanding Ofsted inspection as Manager of a 40-place nursery. I then became a Managing Director of a small collection of nurseries, alongside 2 colleagues. I now work for the Nystagmus Network.

As a teenager I did a local paper round, on my bike. Going a familiar route and/or following my dad who would call out instructions or hazards made this possible.

I love to travel and have done so through university (teaching in India for 2 weeks), and more recently with my husband to Vietnam, Italy and Croatia. I find bright sunshine a real challenge and so I’m heavily reliant on my husband guiding me, particularly when it comes to negotiating steps and busy places.

Since having my son in 2018 (who has incredible sight), it has instilled in me how important it is to normalise disability. At three 3 and a half he is already learning how to help me: pointing out steps, describing where something is and telling me what he can see.

I take up offers of help and support, eg cane training, PIP, use of a Blue Badge and discounted theatre tickets. These make everyday life more accessible for me.

Nystagmus is part of me and makes me who I am today. I challenge myself to do things that I know will be difficult: I travelled to Shanghai on my own to visit a friend and in 2011 I climbed Scafell Pike, with my now husband. This was an immense challenge: the uneven ground and countless steps made it particularly difficult for me.

I want to show people that having a disability doesn’t have to limit you. Yes, I have had to work harder than others but I’m proud of what I’ve achieved.

Charlie and his fellow team mmebers wearing their Nystagmus Network sports tops.

Charlie’s Nystagmus Network football team

Charlie loves football. He also loves his team. When they were short of money to pay for the under 7s new kit, Charlie had the brilliant idea of asking the local bank. Banks have lots of money, don’t they?

Charlie’s letter arrived on Luke’s desk and then Luke also had a brilliant idea. He decided he would raise the £300 the team needed and let Charlie nominate his favourite charity as the team sponsors.

Luke says: “I love football myself and this letter really spoke to me. I wanted to help. So I decided to compete and raise the money to help this cause.”

Choosing a charity was the easy bit! Charlie has nystagmus and his whole family supports the Nystagmus Network. They completed the Welly Walk last June.

Luke completed a triathlon in April, raised £300 and Charlie and his team got their smart new sports tops, complete with the Nystagmus Network logo. Well done, Charlie and Luke!

If you’d like to share your nystagmus story, for Nystagmus Awareness Day 2022, please email us at [email protected]

Wyatt smiles for the camera. He is wearing headphones and holding a games console.

How amazing is Wyatt?

Wyatt has always had this positive outlook. He is determined, smart, and gives EVERYTHING his all!

When he was 4 months old he was diagnosed with Nystagmus. We as parents were told that he would never ride a bike, play sports, or even read a book. Everything he would do would be a challenge for him.

With that, my husband and I encouraged Wyatt. Whatever his passion he always tried. He always gave it 110% and succeeded!

Wyatt is 9 now. He loves his bike, rollerblades, driving the go-kart and his FAVOURITE thing to do is sit down and read a good book!

Words cannot describe how great Wyatt is doing! I can’t wait to see what the future holds for him!

Thank you, Tim

Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children.

Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky preview, but no spoilers, for his follow up book, due out later this summer. He is currently writing book three in the series.

When asked what spurred him to write, Tim said he has always loved being creative and has a passion for writing strong characters. He also loves a plot twist and tries to cram in as many as he can to keep his young readers on the edge of their seats.

The Nystagmus Network children’s story

Tim then led the children taking part in the online workshop to write their own story, collaboratively, with everyone chipping in ideas for character names, appearance and even the design of their slippers! Tim promises that the nystagmus children’s story will appear as part of his next book.

Order Tim’s book on Amazon Smile here

Inspired by Tim?

Raindrops story writing and drawing competition for children

What do raindrops mean to you? What do they smell, sound, feel or taste like? What do they make you think of? How do they capture your imagination?

The Nystagmus Network Raindrops competition celebrates the wonderful creativity of children’s writing and illustration.

The best stories and drawings will be published in a special book which will be available to purchase from September 2021.

How to enter

The competition is open to all children with or without nystagmus, aged 5 to 14 years. There will be winners in each age category.

Download the competition rules and an entry form here

Completed entries (entry form plus story and / or drawing on Raindrops writing paper or drawing paper) should be emailed to [email protected] Deadline: 23:59 on Saturday 19 June

Prizes and a book

There will be some fabulous prizes for the winners of each age category, including books signed by your favourite children’s author. As many stories and drawings as possible will be published in a book which will be available for sale from September.

Get sponsored

If your little one is a reluctant writer, why not encourage them by asking friends and family to sponsor them 1p a word?

Download a Raindrops sponsor form here

Thank you, Emma

For Halloween 2020 Emma and her very determined family held a coffee, cake and crafts fundraiser for the Nystagmus Network. All COVID-19 restrictions were followed and the family raised £400. An amazing effort! Thank you so much!

At Halloween 2020 Emma and her very determined family held a coffee, cake and crafts fundraiser (remember those?) for the Nystagmus Network. All COVID-19 restrictions were followed and the family raised £400. An amazing effort! Thank you so much!

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

Contact us here to volunteer

Find fundraising ideas here

Please make a donation here

THANK YOU

Joanne sings for the Rising Phoenix

The voice of Nystagmus Network member, acclaimed soprano and Open Day 2020 keynote speaker, Joanne Roughton-Arnold features in the inspirational documentary, Rising Phoenix, a Netflix production charting the history of the Paralympic Games through the personal stories of some of the sports stars themselves.

Described by Daniel Pemberton, the film’s musical director as “an incredibly talented partially sighted opera singer”, Joanne, who has nystagmus, says it was “a privilege to be part of this immensely powerful film”.

Joanne sings the theme to Paralympian, Bebe Vio’s story. The medal winning fencer is known as ‘the rising phoenix’.

Tag: nystagmus heroes