Tag: nystagmus network

A person is undergoing a sight test in a clinic.

Research participation opportunity in Cambridge

This study aims to look at how the brain behaves in response to changes in vision. There will be two visual examination tasks: one which involves a standard vision chart displayed on a computer screen and the second which involves a microperimetry exam to assess visual field sensitivity. There will also be two behavioral computerised tasks. All of the tasks have been approved and validated by the ethics committee as well as previous researchers who have used these methods. None of the tasks involve any risk and we are offering travel expenses of up to £50 per person to Cambridge. The research will take place at the Vision and Eye Research Institute at Young Street in Cambridge and the tasks should take no longer than 60 minutes. Only one visit will be required.

To take part, please contact Natalie Assaf by email at [email protected]

A woman supports a child with music and movement exercises.

Stress busting workshop for parents and carers

Parents’ online get together, November 29 2023 7-9pm – guest speaker from CONTACT*

At our next online get together for parents and carers we will be joined by a speaker from CONTACT who will deliver a workshop on  Wellbeing Workshop for parents and carers

Here’s what the workshop is about:

Stress can be a huge factor for families. What causes you stress and how do you cope with it?

This online workshop will give you the opportunity to hear other parents’ experiences, learn new strategies and share as much or as little of your story as you wish. We will explore ways of reducing your stress by improving the areas that could help you feel more positive and able to get the most out of life.

After the session you will: 

• understand clearly what stress is and how it affects you 

• learn about coping mechanisms and other people’s coping styles 

• identify new ways of coping with stress and reducing your stress levels

• be motivated to try new stress busting ideas until you find ones that suit you

• improve your wellbeing

To express your interest in joining the session on Wednesday 29 November from 7 to 9pm, please email us at [email protected]. Thank you

*CONTACT is the charity for families with disabled children

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

A card featuring the Nystagmus Network logo and an ice cream cornet and the text 'please take a moment to nominate us'.

Please nominate us to win a £1,000 donation

Please take a moment to nominate the Nystagmus Network for the chance to win a £1,000 donation. That’s enough to pay for a year’s supply of nystagmus information leaflets for families across the UK.

The competition is being run by the Benefact Group.

Please use the link below to nominate us. Thank you!

Nominate Nystagmus Network here

A poster promoting participation in the University of Sheffield interview research on paediatric services.

New low vision study calls for participants

Are you aged between 16 and 25?
Have you accessed UK-based eye clinic and low vision services as a child or young adult?
If so, a team at the University of Sheffield would like to invite you to take part in a research project.
They want to understand the impact of paediatric low vision clinical services from the patient’s point of
view. You can talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.

For more details, contact Asmaa Elgohary by email at [email protected]
or follow this link

Peter smiles for the camera. He is wearing a purple shirt.

Peter’s nystagmus story

Peter’s nystagmus story comes in the form of a poem.

Thank you for sharing, Peter

And the boy inside me still cries

Something is wrong with my eyes.

At birth the angels left a rare mark, 

and the boy inside me still cries.

My parents searched for whys.

Is he blind? Will his world be dark?

Something is wrong with my eyes.

There’s no cure, the doctors advise,

his life will follow a difficult arc,

and the boy inside me still cries.

Bullied and bruised, I wore a disguise,

to shield me from stares and remarks.

Something is wrong with my eyes.

I found ways to cope and improvise,

quelling the urge to end my life’s walk,

and the boy inside me still cries.

It’s been six decades now. I seldom sigh.  

What I can do is my trademark.

Something is wrong with my eyes,

and the boy inside me still cries.

DVLA logo

DVLA consultation opens on fitness to drive

The Driver and Vehicle Licensing Agency (DVLA) is responsible for establishing whether a driving licence holder or applicant can meet the appropriate medical standards of fitness to drive. Medical enquiries can range from the consideration of information provided by the driver or applicant to a more detailed investigation which can include information provided by medical professionals, reports or examinations. Consideration of medical cases is necessarily thorough so that the right balance between road safety and the needs of a driver to maintain mobility is maintained.

As the volume and complexity of driving licence applications or renewals continues to increase for applicants who have one or more medical conditions, the government believes that the time is right to review the existing legal framework.

In order for DVLA to take this forward, today Monday 31 July, they have published a call for evidence on driver licensing for people with medical conditions, which can be found here:

https://www.gov.uk/government/consultations/driver-licensing-for-people-with-medical-conditions-call-for-evidence

The call for evidence sets how and why licensing decisions can be so complex for individuals with medical conditions, the roles of those involved in the process and presents the challenges that demographic and other changes poses to the current process.  It explores how other countries deal with drivers with medical conditions and other situations where medical fitness is assessed. The call for evidence also considers the potential impact that technological advances may have on the future of driving and the way DVLA assesses medical fitness to drive.

The call for evidence runs until Sunday 22 October 2023. Evidence will be gathered from experts across organisations.  Responses to the call for evidence will be analysed to assist with reviewing the existing legislative framework.

You can contribute the the Nystagmus Network’s response to the call for evidence by emailing us at [email protected]

Nystagmus and Driving front cover.

Our digital guide to Nystagmus and Driving

Download a copy of the Nystagmus Network’s digital guide to Nystagmus and Driving here

A flyer promoting PayPal Giving Fund's 'Help a small charity make a big impact' campaign.

#OneTapBigImpact

You can make a difference to the Nystagmus Network by simply selecting us as your favourite charity on Give at Checkout via PayPal. We could win up to £20,000 in match funded donations.

Please visit https://www.paypal.com/fundraiser/set-favorite-charity, search for the Nystagmus Network and select us as your favourite.

#OneTapBigImpact2023 see website for full Ts and Cs.

One Tap Big Impact – select us as your favourite here

Thank you for your support!

The logo of the University of Plymouth.

Research participation opportunity in Plymouth

Perceptual Learning for Nystagmus

We are delighted to offer people who have nystagmus the opportunity to take part in an exciting new research study at the University of Plymouth, in collaboration with Cardiff University and jointly funded by the Nystagmus Network and Fight for Sight.

Who are we looking for?

Anyone aged between 18 and 35, diagnosed with Infantile (Congenital) Nystagmus

What will you be doing?

  • Complete vision tests on computer at the University of Plymouth to assess how well you can see static and moving letters and static dots
  • Complete vision training at home for 1 hour per day, 3 days a week over a period of 4 weeks

Who are we?

Dr Mahesh Joshi

Dr Mahesh Joshi

Dr Asma Zahidi

Dr Asma Zahidi

For more information, please contact: [email protected] or [email protected]

Travel Expenses

We will be paying your travel expenses to Plymouth up to £50.

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.