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.

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 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

 

 

The logo of Women and Girls in Science, February 2024.

Celebrating Women and Girls in Science

To celebrate this year’s International Day of Women and Girls in Science, let’s come together to learn more about the incredible achievements of women in the field!

Join the Nystagmus Network for a fun and educational online quiz!  Test your knowledge and learn about the trailblazing women who have shaped the world of science! Prizes will be awarded!

Get ready to embark on a knowledge-filled journey! And let’s unite for a great cause and show appreciation for the remarkable women shaping the future of science!  Don’t miss out — spread the word and tell your friends!

Take part in the Women in Science quiz here

Richard stands at a podium and raises his arms in celebration.

The Richard Wilson Essay Prize

The Nystagmus Network is pleased to launch a student essay competition. Open to students of all levels, from undergraduate to post-doctorate, in the fields of Ophthalmology, Optometry and Orthoptics, currently studying or working at UK institutions.

First Prize: £500, the opportunity to present at the Nystagmus Network International Nystagmus Symposium 2024 in June and an invitation to the charity’s Ruby Year celebration at the House of Lords in November.

Second Prize: £200 and the opportunity to present at the Nystagmus Network International Nystagmus Symposium 2024 in June

Third Prize: £100

All three prize winners’ essays will be published on the Nystagmus Network website.

The competition is inaugurated in honour of Richard Wilson OBE, former Chair of Trustees of the Nystagmus Network who sadly passed away in 2023. The prize will be presented by Richard’s widow, Mrs Jackie Wilson on behalf of the charity at a VIP celebration event in London.

Full details of the competition, including how to apply, this year’s essay topic, the judges and the all-important deadline can be found on the Nystagmus Network website here.

Contact details for the Nystagmus Network

email:     [email protected]

Tel:         01427 718093

web:       www.nystagmusnet.org     

 

 

The banner of the Great Winter Get Together as inspired by Jo Cox featuring bunting.

The Great Winter ‘nystagmus’ Get Together

Let’s banish the winter blues!

Please add 7pm on Thursday 11 January to your calendar and join us for the Great Winter ‘nystagmus’ Get Together, inspired by the Jo Cox Foundation, where we will bring together online parents and carers as well as adults living with congenital or acquired nystagmus for conversation, a quiz and lots more.

Email us to be sure of receiving the Zoom link.

We look forward to having you with us then.

This event is the first of our Ruby Year celebrations

 

The front cover of the Nystagmus Network guide to nystagmus and the early years.

Nystagmus and the early years

The Nystagmus Network is proud to launch a new guide to nystagmus and the early years. Written for new parents and carers where a baby is newly diagnosed with nystagmus, this digital guide talks you through what to do, where to find help and how to support your child’s development from 0 to 5 years.

Nystagmus and the Early Years is the latest in a whole range of information guides for parents and carers, all available to download for free from our website in PDF and Word doc format. Plain text print versions are available on request to [email protected]

Reviewing the new guide, Nystagmus Network trustee and chair of the charity’s Support Committee, Kathryn Swanston, said: “Congratulations on another excellent resource. Well done to all involved in putting this together. The addition of the parent’s perspective is great.”

Download your copy of the new early years guide here