Blog

Cohen smiling for the camera, wearing glasses and a white polo shirt with a black striped collar

Cohen’s Story

 

“Cohen was diagnosed with congenital nystagmus when he was around 6 months old. He is now almost 10 years old. Cohen’s cousin was diagnosed with nystagmus a year or so before him. This gave us much reassurance that Cohen will be ok. We’ve been so lucky. Cohen has had the same visual impairment teacher since nursery. She makes sure all the right settings are in place for him in school and helped him be entitled to extra help outside of school. I’m forever grateful for his VI teacher. He has a lovely group of friends in school and every school report is about him growing in confidence which is so nice to hear. He enjoys football, Xbox, swimming. He constantly makes us proud and never lets his visual impairment hold him back.”

 

Sue speaking at a Nystagmus Big Meet Up.

Sue’s 1984 Story

In 1984 I had never heard of nystagmus and had no connection with the condition at all. 

It was for me a very momentous year, though, because it was the year I met the man who was to become my husband. 

We were both studying Travel and Tourism and became firm friends, helping each other prepare for our British Airways fares and ticketing qualifications.

We married in 1987 and then in 1991 heard the word nystagmus for the very first time when our second child was born, our daughter.

Soon afterwards we were introduced to the Nystagmus Network and have stayed connected with the charity ever since. After serving as a volunteer Parent Adviser and Trustee I became a member of the staff team in 2015.

You can watch a short video here about the story of my daughter’s diagnosis, my very first encounter with the Nystagmus Network and what happened after that. 

Two young children in party clothes stand beside a frosted cake.

Onyeka’s 1984 Story

This is a photo of my elder brother (Tony) and me at my first birthday celebration in Nigeria. Report has it that he desperately tried to steal the show but I didn’t let him.🙂Can you spot my dad’s analogue radio? Growing up, I never heard the word nystagmus, although I had a few friends with albinism. I only became aware of nystagmus, in the early 2000s, while studying Optometry at the University of Benin.

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]

 

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