John’s 1984 Story – The world is my chauffeur

We belong to many tribes, often overlapping, during our lives. The story of my nystagmus tribe starts in 1984. In particular, the day I first met others with nystagmus and parents, like Vivien, of children with nystagmus. It still ranks as one of the most important days in my life.

That summer evening opened a door into a new world. At last, I could ask questions about nystagmus and get answers. And, when none of us had the answers, we’d go looking for them. Crucially, together, we could even laugh about nystagmus. And agree that not being able to do things like drive, well that’s not the end of the world.

The community that began 40 years ago continues to provide answers to tens of thousands of people around the world. And the Nystagmus Network still helps to dry the tears and spread a little laughter.

Not surprisingly then, volunteering with and eventually working for the Nystagmus Network have been far more worthwhile than the years I spent as a financial journalist. And, even though I’m no scientist, the research side continues to fascinate me.

Forty years on I’m lucky to still be volunteering with other sight loss charities, as well as occasionally helping NN. As part of our ruby celebration, I would like to recognise the contributions to this charity of some who are no longer with us, among them Bruce Green, Steve McKay, Andy Machin and Richard Wilson.

Because of nystagmus, like me, neither Steve nor Richard could drive. That didn’t stop us enjoying life – or even travelling. In our own ways, all three of us realised that the world is full of drivers. The world really is our chauffeur.

Mike and his nephew, both wearing WWE T-shirts, fist bump for the camera.

Mike’s Southampton family send off

As Mike takes on his latest Walk for Wiggly Eyes 4 challenge in Croatia, his Mum, Karen, tells us about an amazing party she hosted for Mike, his family and friends at home in Southampton.

“Mike of Walk for Wiggly Eyes (W4WE) had a week’s stop at home before he started the challenging 1400 mile walk along the Croatian Long Distance Trail (CLDT).  This presented a great opportunity for friends and family to have a get together for a fun(d) raising party. Thanks to the generosity of everyone and the fantastic gifts that were given as prizes for the raffle, over £900 was raised to share between the Nystagmus Network and Gift Of Sight.

‘Mike has congenital nystagmus and consequently his vision is impaired however his inspiration for this walk is his nephew Archie (pictured with Mike) who also was born with nystagmus. Mike’s goal via his W4WE fundraising is to continue to raise awareness of nystagmus and donations to fund ongoing research to improve the sight of those living with nystagmus and other eyesight conditions.

‘Mike is now on the CLDT trail and he is going to have to tackle many obstacles along the way. You can follow his journey via https://www.walkforwigglyeyes.com/ and if you would like to donate to help Mike reach his target please click on the link  https://www.justgiving.com/page/walk-for-wiggly-eyes-nystagmus-network4″

Thank you Karen and thank you to everyone who gave so generously at the party.

A postcard for the big nystagmus meet up in London on 13 July, featuring an image of Maria Theodorou, a clinician at Moorfields.

Booking is now open for our London event

Our next big nystagmus meet up takes place in London on Saturday 13 July, from 11am to 4pm.

This is your chance to hear all the latest nystagmus news, learn how to live well with nystagmus, meet nystagmus doctors and people living with nystagmus, just like you.

Tickets are available now through Eventbrite at £12 per person, to cover the cost of lunch and a raffle ticket. Under 5’s are FREE, but please note that we are unable to provide creche facilities at this event.

We look forward to seeing you in London.

Book for the London event on Eventbrite here

A group of adults and children walking together along a gravel path in a park with large trees.

Walk with us

On 18 and 19 May we’re encouraging all our followers and supporters to get out for a walk. The weekend falls during Mental Health Awareness Week. Spending time outside with a friend or family member, or even simply enjoying some fresh air alone, is known to boost positivity and is good for both physical and mental health.

So, we’re inviting members of the nystagmus community to join us for a walk, in your local area, wherever you are. Whether you choose a park, the beach, a quiet corner of your city or a leafy lane, whether you go solo or invite others along, let us know where you’ll be walking to supercharge your health and wellbeing for the summer months ahead.

Record your nystagmus walk by emailing us at [email protected]

Sue, wearing her Nystagmus Network T-shirt, sits on the wall of a churchyard with her two Irish Setter dogs.     Sue will be walking with Ailbe and Bella.

Onyeka in a park near her home. She is wearing her Nystagmus Network T-shirt.     Onyeka will be walking in her local park.

A young boy wearing a green T-shirt, blue shorts, a sun hat and sunglasses sits in a tree.     Henry will be walking in the woods with his family.

Peter’s 1984 Story

At 12 years old, I was preparing for my first summer Scout camp in Guernsey, which required a 10-hour ferry ride from Weymouth, marking my first time leaving mainland UK. Frankie Goes to Hollywood’s “Two Tribes” was topping the charts, with the music video playing on the ferry, alongside Cyndi Lauper’s “Time after Time”.

My home was in a village in Shropshire where my Dad still resides and I had yet to visit London. I recall sneaking money from my piggy bank with my twin brother to buy penny sweets from the Post Office before playing table tennis and football. Apparently, a pint of beer cost less than 80p, according to my Dad. Despite being an Aston Villa fan, I had to endure Liverpool winning the old First Division, as my brother was a Liverpool supporter. We also acquired our first personal computer, a ZX Spectrum and spent hours trying to pirate games loaded via an audio tape player.

The year was marked by the Ethiopian famine, with Band Aid’s “Do They Know It’s Christmas” released later in the year and I remember Michael Buerk’s news report on BBC News. Television was limited to four channels, with Channel 4 having launched two years prio, and VHS recorders were starting to become common. Grange Hill was a popular show tackling topical subjects for young viewers.

Outside, I spent a lot of time playing cricket, football, kerbie and riding bikes with friends in our neighbourhood, with Choppers and Grifters being the bikes to have. Little did I know, it would be another 21 years before I’d encounter the word “nystagmus” for the first time.

A blue and green striped egg with the words Nystagmus Network and the number 1 on it in white.

Join our virtual Easter Egg Hunt

🐰🌷 Ready to hop into some Easter fun?

Join our virtual Easter Egg Hunt through our website to find hidden eggs🥚each with a letter on it to be discovered!

Collect all 9 letters and unscramble them to reveal a secret word!

Then email us at  [email protected] with the correct word to win egg-cellent prizes!

🏆 Let’s spread joy and support Nystagmus Network this Easter!

Get cracking and start your hunt NOW! 🐣

HINT – the eggs look like the one at the top of this post, but have letters on them instead of a number!

 

A poster about the Cascade research project. Details in the blog post.

Take part in the Cascade project

A research team at Anglia Ruskin University is recruiting parents to take part in their latest research project. Here’s the team to introduce it:

We’d like to let you know about a new project we are carrying out with children with visual impairment and their parents.  You can use the QR code on the advertisement above and below to have a look at our website. The project is piloting a parent-led 6-week programme that we have designed, which focuses on enhancing creativity, social interaction, communication and spatial awareness.

Research reports that children with vision impairment (VI) can benefit from additional
support in the areas of social interaction, communication, creativity, and spatial
awareness. Unfortunately, until now little work has been done to examine whether an
intervention programme can bring about positive outcomes in these areas. As all of
these areas are essential for the overall development of children, it is crucial that
research focuses on increasing these abilities in children with congenital visual
impairment.

To increase exposure to these important everyday skills, the research team
has devised a caregiver-led intervention program lasting for 6 weeks and conducted
fully online. During the 6-week programme, the child and a primary caregiver
(parent/guardian) will be provided access to an App that will guide them through
different topics explored in the CASCADE project. As the caregiver and child complete
different lessons on the App, the caregiver will be prompted to complete a series of
more independent activities with the child to rehearse these skills (i.e., role-playing). The App will also provide easy mini games for the child to complete – these have been
created with the aim of being a fun, interactive way to practice these important everyday life abilities.

We are looking to recruit parents of children of primary school age (6 to 11/12 years) with logMAR greater than 0.7, with relatively fluent language ability and no additional complex needs. If you are a parent or caregiver of a child that you think might be eligible and you are interested to know more, please email Martina at [email protected].

We very much appreciate your interest in the project and we look forward to hearing from you.

Elena Sakkalou and Martina Finessi

This project will be part of Martina Finessi’s PhD thesis. Her supervisors
are Dr. Elena Sakkalou, Dr. John Lambie, and Prof. Naomi Dale.

 

A poster about the Cascade research project. Details in the blog post.

A stack of pancakses on a plate topped with butter, strawberries and blueberries.

Join us for a flipping fantastic celebration

Calling all pancake enthusiasts and creative cooks! It’s time to dust off your spatulas and put your culinary skills to the test because the Nystagmus Network is hosting an exciting Pancake Day Competition to celebrate our 40th Anniversary!

Get ready to sizzle, flip, and dazzle with your pancake creations as we invite you to participate in our themed pancake competition, The Great ‘nystagmus’ Pancake Off! We’re looking for pancakes that capture the spirit of our Ruby Year in the most delicious and imaginative ways possible!

 To enter:

  1. Whip up your most innovative pancake masterpiece inspired by our Ruby Year.
  2. Snap a photo of your pancake creation.
  3. Share your photo on social media using the hashtag #RubyPancake and tag @NystagmusNetwork or email it to us at [email protected]

Our esteemed trustees and members will be judging the entries based on creativity, presentation and adherence to the Ruby Year theme. The winners will receive fabulous prizes and, of course, bragging rights as pancake champions!

Whether you’re a seasoned pancake pro or a first-time flipper, everyone is welcome to participate.

Let’s make this Pancake Day one to remember as we celebrate 40 years of supporting people living with nystagmus. Together, let’s spread joy, creativity and deliciousness one pancake at a time!

#RubyPancake @NystagmusUK

Marsha and George stand together in a parliamentary council chamber.

George gives his oral evidence to the APPG

George has not yet completed his first month as an intern Information Support Officer with the Nystagmus Network. This week he was given a very special assignment, to give oral evidence to the APPG on eye health and visual impairment as they undertake their inquiry into employer attitudes and blind and visually impaired people.

Stepping into the historic halls of Parliament, I felt a mix of excitement and nerves. As a visually impaired individual, the opportunity to speak at the All Party Parliamentary Group (APPG) on Lived Experience was not just a chance to share my perspective but also a responsibility to advocate for greater inclusivity in the workplace. Chaired by the esteemed MP Marsha de Cordova, the session focused on gathering oral evidence for the inquiry into employers’ attitudes towards individuals with visual impairments.

Representing the Nystagmus Network was both an honour and a privilege. As an advocate for individuals with visual impairments, I had the opportunity to shine a spotlight on the invaluable work carried out by the Nystagmus Network in supporting people living with nystagmus.

One of the most striking aspects of the session was the genuine interest and engagement from the other speakers and hearing about their own personal experiences. Marsha de Cordova’s leadership fostered an environment where every voice was not just heard but valued. As she turned to me for my response, I spoke passionately about the barriers faced by individuals with visual impairments in securing and maintaining employment. From inaccessible job application processes to the lack of accommodations in the workplace, I highlighted the systemic challenges that often hinder the professional aspirations of individuals with sight loss. Drawing from my own journey, I emphasised the importance of proactive measures such as reasonable adjustments and awareness training to create more inclusive work environments.

The exchange that followed was not just a dialogue but a catalyst for change. Marsha de Cordova’s thoughtful questions and receptiveness to our testimonies signalled a genuine willingness to address the issues at hand. Through open and honest conversation, I felt a sense of optimism that real progress could be made towards dismantling barriers and fostering greater inclusivity.

Leaving Parliament that day, I carried with me a renewed sense of purpose. While the road ahead may be challenging, the experience reaffirmed my belief in the power of advocacy and collective action. As Marsha de Cordova continues to champion disability rights within the halls of Parliament, I remain committed to lending my voice to the cause and working towards a future where every individual, regardless of their abilities, can thrive in the workplace.

In conclusion, my participation in the APPG Lived Experience was not just an opportunity to speak truth to power but a testament to the resilience and determination of individuals with visual impairments. Together, let us continue to advocate for a world where inclusivity is not just a goal but a reality for all.

George Plumridge

 

 

A flyer for this research participation opportunity giving the same information as in the blog post and including a thumbnail image of Katherine.

Have a brain scan for research – recruiting now!

Aged 18-55?

Diagnosed with infantile nystagmus?

Within travelling distance of Cardiff?

Researchers at Cardiff University invite you to take part in an exciting research study looking into brain activity in infantile nystagmus

What does it involve?

  • A quick eye examination
  • Lie in an MRI scanner and look at moving shapes and patterns on a screen

Where and when will it be?

  • At Cardiff University
  • From now until May 2024

Who will run the session?

Katherine Ward, optometrist and PhD researcher at Cardiff University

Travel expenses

Travel expenses will be paid up to £50

For more information, please contact Katherine at [email protected]