Tim holding an award

How amazing is Tim?

Tim has a whole clutch of awards for his work.

He says: I ain’t done bad for a lad that can’t see too well.

This is Tim’s amazing nystagmus story

I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to drive.

After leaving school I took a degree in Fine Art in Nottingham and then moved on to the Royal College of Art where I took a Master’s degree in film.

Somehow, despite my lack of visual acuity, I have managed to forge a career in post-production sound for film and television. 

Much of my work is re-recording dialogue with cast members and my hearing has been my asset. I may not be able to see dialogue in sync as well as my colleagues, but my hearing is what I rely on.

People I have worked with aren’t really aware of the full extent of my condition. I hide it well and none of the actors I have worked with have even noticed.

My work has taken me to the US and Europe and I have had a pretty successful time working on films such as “Chicken Run”, “Mamma Mia” and “Les Miserables”, as well as major TV series including “Brave New World”, “The Nevers” and every episode of “Game of Thrones”. You can hear my voice in many of these shows, too.

I have been nominated for numerous awards along the way and have won seven MPSE (Motion Picture Sound Editors Guild) Golden Reels and four Primetime EMMYs. I ain’t done bad for a lad that can’t see too well.

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]

Doug wearing a wetsuit and swimming goggles.

How amazing is Doug?

Earlier this year, Doug ran the Royal Parks Half Marathon for the Nystagmus Network. He raised £200.

Doug says: 13.1 miles. 25,000 steps, a step for every time someone has told me I need to have my glasses checked.

This is Doug’s amazing nystagmus story

I was born with congenital horizontal nystagmus and astigmatism, thought to be due to ocular albinism. It was noticed by my mum at birth as her wobbly headed child started his driving-licence-restricted, squinting-to-focus life. I was brought up no different to my brother, people commending my parents for not letting my condition hinder or stop me, to which they replied, “what disability?!”. I had a reading board at school, extra time in exams and looked left in school photos (the side my eyes move less). I was encouraged to play any sport I wanted. Finding out the hard way that cricket was not for me after taking two balls to a sensitive area and being caught out with 2 runs. I have always been a keen swimmer, runner, cyclist and still play squash (I can play due to the simple black/white contrast). During my self-conscious teenage phase at school, I didn’t wear glasses and struggled on. I would sit at the front of class and luckily had helpful teachers and friends. My friends poked fun at me by creating bespoke miniature eye test charts and were in hysterics when they saw my “blown up” GCSE geography exam map. It took up two tables and I had to walk around it like a war cabinet preparing for an ambush. It was joked in my yearbook that I couldn’t see past the end of my nose, unsure whether this was because of my rubbish eyesight or my big nose.

I only started wearing glasses again during sixth form and struggled, due to astigmatism, to wear contact lenses. Now, I cannot imagine not wearing glasses, even with my lockdown moustache and big nose, I look like a joke-shop disguise. After sixth form, I was lucky enough to accept a place at Sheffield University to study medicine. Their disability and dyslexia services were brilliant and although I did not have to call on them, were thorough in the assessment of my needs and in offering me support.  I graduated from medical school and started Emergency Medicine training after my foundation doctor years. I am currently on a year out and undertaking a Sports and Exercise Medicine Masters. I have been fortunate enough to continue my passion for sport by having experience during university working with elite-level teams and I currently work for a Premier League team and their academy as a doctor.

I have struggled to come up with lots of examples as to how I have had to adapt to life with nystagmus. I am thankful for my parents bringing me up with no fuss and just getting on with things. One major example is driving. I was told early on that I wouldn’t be able to drive and therefore wasn’t disappointed when at 17, all my friends were learning. Instead, my friends became my chauffeurs or taxi drivers. As a result, I have had to become public transport savvy – I say as the bus I wanted drives past my squinting face because I struggle to see the numbers.

I was introduced to the Nystagmus Network charity after my girlfriend pointed out Richard Osman, the nystagmus messiah, on TV, although to me his eyes look normal… I am amazed by the charity’s work to support those with nystagmus and spreading the word about the condition. It is a wonderful community. I was incredibly proud and emotional running the Royal Park Half Marathon and raising money for a worthy cause so close to my heart.

I was going to open this blog by saying “I have suffered with nystagmus for…”. But this is completely incorrect, and I do not see my nystagmus as a hindrance. I see it as my condition that makes me “me” and one that I have had to adapt to throughout my life without necessarily realising. I do not think it has held me back or stopped me doing anything. I would love to inspire young people with nystagmus, or parents of, to continue adapting and to not let it hold them back from doing what they want to (within legal limits as you may not legally be allowed to drive).

How amazing are you?

It wouldn’t be Nystagmus Awareness Day without your amazing nystagmus stories. So once again we’re asking you to celebrate your achievements, despite of, or maybe even because of having nystagmus.

Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success. We want to celebrate your achievements with you and make Nystagmus Awareness Day 2021 even more amazing!

We will feature all your amazing stories here and on our Facebook page

Send your amazing nystagmus story to [email protected]

The logo of the Captain Tom 100 challenge for the Nystagmus Network featuring an image of a girl in a yeloow rain hat and cat, with a yellow umbrella doing the thumbs up.

Georgie’s Captain Tom 100 challenge

Twelve year old Georgie will be baking 100 cookies in honour of the memory of Captain Sir Tom Moore this weekend. That’s her #CaptainTom100 challenge to raise funds for the Nystagmus Network.

We’re so grateful for your support, Georgie. We know those cookies are going to be yummy!

Please sponsor Georgie here

Start your #CaptainTom100 here

Captain Tom 100 logo, with an image of Captain Sir Tom showing the thumbs up

Leon’s Captain Tom 100 challenge

To honour the memory of Captain Sir Tom Moore and his amazing fundraising legacy, Leon will be running 100 kilometers over the three day weekend to raise money for the Nystagmus Network research fund.

Thank you so much for your support, Leon and all the very best for your challenge.

Please sponsor Leon here

Start your #CaptainTom100 today

VMLM image of runners competing in the London Marathon physical race.

Nystagmus Network runners to be part of world’s first 100,000 person marathon

50,000 runners to take on world’s biggest virtual marathon on Sunday 3 October with 50,000 runners to tackle the traditional London Marathon route on the same day

With the results of the 2021 Virgin Money London Marathon Ballot announced recently, the Nystagmus Network has 3 places for anyone who wants to raise crucial funds while making history as part of the world’s first 100,000-person marathon.

Following the announcement that London Marathon Events plans to stage the world’s first 100,000-person on Sunday 3 October, the Nystagmus Network is inviting its supporters across the UK to be a part of it by running to raise funds in its name.  

On Sunday 3 October 50,000 participants will take on the traditional course from London’s Blackheath to The Mall – an increase of more than 7,000 on the previous finisher record – while another 50,000 people around the globe run the 26.2 miles on the course of their choice, anytime from 00:00:00 to 23:59:59 BST, in a virtual event.   

The physical and mental health benefits of being active have been brought sharply into focus during the pandemic, and this biggest-ever London Marathon offers more people than ever before the chance to experience these benefits while raising much-needed funds for charity.  
The Nystagmus Network has THREE places available in the virtual event and is encouraging anyone who was unsuccessful in the ballot to contact them for a chance of taking part.  

Hugh Brasher, Event Director of London Marathon Events, said: “With the national vaccination programme underway, we are delighted to announce our exciting plans for the world’s first 100,000-person marathon. The London Marathon is the most popular marathon on the planet, with a world record 457,861 people applying in the ballot for a place in the 2020 event, and the incredible success of the 2020 virtual event shows the huge appetite to be part of the world’s greatest marathon.”

Nystagmus Network places in the virtual Virgin Money London Marathon are available on a first come, first served basis, but priority will be given to applicants who are members of the charity.
Nikita smiles for the camera

Congratulations, Dr Thomas

The Nystagmus Network is sending huge congratulations to the newly qualified Dr Nikita Thomas. Dr Thomas achieved her PhD this month.

Nikita is well known to members of the Nystagmus Network for her engaging personality and confident presentations on her latest nystagmus research.

On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). She was nominated by the Nystagmus Network and her senior colleagues at the School of Optometry and Vision Sciences, Cardiff University for her innovative work in perimetry.

We’re sure that Nikita has a brilliant nystagmus research career ahead of her. With her PhD behind her she can now concentrate on her post-doctoral career.

Nikita says: “I never thought this day would actually come! I passed my PhD viva and I’m officially Dr Thomas. I was just an average kid at school who raised eyebrows when she chose science at A-levels, and now I’m a fully-fledged scientist. Amazing feeling.”

Congratulations, Dr Thomas!

Sam Jones

Sam’s challenge of a lifetime

Nystagmus Network Trustee, Sam Jones will be cycling 500 miles around the North Coast of Scotland in June this year to raise money for the Nystagmus Network.

It’s the ultimate road trip and the challenge of a lifetime.

What people may not realise is that Sam has nystagmus himself and is acually the reason the Nystagmus Network charity was formed.

Find out more about Sam and his trip in this video

Sponsor Sam’s North Coast 500 ride here

Vijay Taylor

Nystagmus does cause visual crowding – it’s official

It’s long been understood that people with nystagmus can struggle to pick out objects from an image or face in a crowd. That’s a phenomenon called visual crowding. But how does nystagmus cause this?

Now Vijay, Taylor, nystagmus researcher at London’s Moorfields Eye Hospital and University College London has shown that the eye movements associated with nystagmus are responsible.

Eye movements elevate crowding in congenital idiopathic nystagmus

Mr Taylor has been undertaking a PhD in visual crowding and idiopathic nystagmus and this month his findings were preliminarily published. He says: “I hope through my findings and investigation of nystagmus eye movements we can develop tools to improve access to education and daily tasks.”

For Vijay having his work published is ‘super exciting’.

The Nystagmus Network helped recruit research participants for the study. Thank you to everyone who took part and well done, Vijay! We’re super excited, too!

Read the publication online here

Zoe wears a care worker's uniform and a face mask pulled down under her chin for the photo.

Thank you, Zoe

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  

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU

Nikita smiles for the camera

Thank you, Nikita

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  

Fundraise for the Nystagmus Network here

Contact us here to volunteer

Please make a donation here

THANK YOU