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

 

A patient is having their vision tested at an optical practice.

Measurement of visual function in infantile nystagmus: a systematic review

As a member of NUKE, the Nystagmus UK Eye Research group, the Nystagmus Network is delighted to see the publication of a literature review of functional vision testing for Infantile (Congenital) Nystagmus. The authors are Bader Almagren, NUKE and Matt Dunn.

NUKE sees this as a step towards establishing vision testing in cases of nystagmus which more closely measures what people living with the condition actually see.

Read the full article online at the BMJ/BJO here

Background/aims Recent work has called into question the ability of visual acuity (VA) to accurately represent changes in visual function in infantile nystagmus (IN). This systematic review investigated factors affecting visual performance in IN, to guide development of suitable alternatives to VA.

Methods Included studies used an experimental manipulation to assess changes in visual function in people with IN. Interventional studies, case series and case studies were excluded. Six databases were searched in August 2023. Selection, detection, attrition and measurement bias were assessed. Due to heterogeneous methodologies, narrative synthesis was undertaken.

Results Eighteen relevant papers were identified, 11 of which complied with the review criteria. Articles were grouped according to the factor manipulated to evoke within-participant changes in performance (motion blur, psychological state, gaze angle or visual crowding). Optotype, image, grating and moving stimuli have been employed under varying lighting conditions and exposure duration.

Conclusion Several factors affecting visual performance should be considered when assessing visual function in IN. While maximum VA is a useful metric, its measurement deliberately minimises nystagmus-specific factors such as changes in visual performance with gaze angle and the ‘slow to see’ phenomenon. Maximum VA can be measured using the null zone, providing unlimited viewing time, reducing stress/mental load and minimising visual crowding. Gaze-dependent functional vision space is a promising measure which quantifies the impact of the null zone but does not consider temporal vision. Although no complete measurement technique has yet been proven, this review provides insights to guide future work towards development of appropriate methods.

The Concise Practice Point for managing nystagmus in childhood, published April 2023

Publication of Concise Practice Point for managing nystagmus in childhood

PRESS RELEASE, Thursday 5 October 2023

The Nystagmus Network has welcomed the publication of new guidance on the management of nystagmus in children by the Royal College of Ophthalmologists.
The purpose of the Concise Practice Point, now available on the Royal College website, is to provide a single point of reference for busy clinicians when managing patients with this complex eye condition.
The Practice Point can be found online at this link:
https://www.rcophth.ac.uk/resources-listing/managing-nystagmus-in-childhood/
The Nystagmus Network contributed to the development of the Practice Point through its membership of NUKE, the Nystagmus UK Eye research group. Members of NUKE worked together to develop a Nystagmus Care Pathway which sets guidelines on diagnosis and care for patients with nystagmus – the first time such guidelines have been created for this condition.
Vivien Jones, founder and Honorary President of the Nystagmus Network, said “The adoption of these guidelines means that clinicians can now refer to them when treating patients with nystagmus – something that we hope will lead to continuing
improvements in developing standardisation of medical diagnosis and care.”

Clinician Jay Self, University of Southampton, an author of the
Practice Points and founding member of NUKE said “Managing children with nystagmus can be complex and nuanced. By sharing best practice, in an easy to follow guide, we hope to improve all aspects of care for children and their families.”
Coinciding with the publication, Nystagmus Network trustees met Marsha De Cordova MP, who chairs the Eye Health and Visual Impairment All Party Parliamentary Working Group. Trustees were able to brief the MP, who herself has nystagmus, on the future impact of the work that has been done and the publication of the Practice Point.

Watch the CPP Launch video on our YouTube Channel here

Ends

For further information, please contact the Nystagmus Network
Email: [email protected]
Tel: 01427 718093
Nystagmus Network website
www.nystagmusnetwork.org
Royal College of Ophthalmologists Practice Points
https://www.rcophth.ac.uk/resources-listing/managingnystagmus-
in-childhood/
NUKE members include
Gemma Arblaster, University of Sheffield
Matt J. Dunn, Cardiff University
Jonathan T. Erichsen, Cardiff University
Helen Griffiths, Sheffield Children’s NHS Foundation Trust
Chris Harris, Royal Eye Infirmary, Plymouth & University of Plymouth
Helen Kuht, University of Leicester
Helena Lee, University of Southampton
Rebecca McLean, University of Leicester
Lee McIlreavy, Cardiff University
Frank Proudlock, University of Leicester
Sue Ricketts, Nystagmus Network
Jay E. Self, University of Southampton
John Sanders, Independent Patient Representative
Fatima Shawkat, University Hospital Southampton
Maria Theodorou, Moorfields Eye Hospital
Mervyn Thomas, University of Leicester
Nikita Thomas, Cardiff University
Katherine Ward, Cardiff University
J. Margaret Woodhouse, Cardiff University

Fight for Sight and Nystagmus Network logo.

Call for research grant applicants

The Nystagmus Network is delighted to announce that we are again partnering with Fight for Sight this year to offer the Small Grant Award Scheme. The grants are available for clinical research addressing visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing/analysis or treatments.

We are delighted to inform you that the scheme is now open for applications, with the deadline of 13:00 on Wednesday 13 September 2023.

This year we particularly welcome applications from Early Career Researchers.

  • Small Grant Awards are intended to support early career research, which should be used to collect preliminary/pilot data to make research ideas more competitive when developing larger follow-on funding applications. These awards offer competitive funding of up to £15,000 to clinical or research scientists to conduct stand-alone research projects for up to 12 months.
  • Please visit the Fight for Sight website for more details, including in depth guidance, and to access the online grant management system.
  • For any queries during the process, please email [email protected].

You can contact us if you require any additional information, and we look forward to working with you through the process.

A postcard with details of the big nystagmus meet up Manchester featuring the Manchester bee.

The big ‘nystagmus’ meet up – Manchester

Saturday 23 September, 10am to 3pm

You are warmly invited to join Nystagmus Network staff and trustees for our next in person event – the big nystagmus meet up, Manchester.

We shall be at The Limelight, a fabulous community hub in Trafford, just a short tram or bus ride from Piccadilly station.

We can promise you some great guest speakers, information and advice on all aspects of living with nystagmus including local services, a Q+A session with clinicians, and, most importantly of all, the chance to meet other parents and people living with nystagmus, just like you.

For more information and secure your place, please contact us at [email protected]

This event is funded thanks to a Magic Little Grant from players of the People’s Postcode Lottery.