Tag: nystagmus network

James, wearing sunglasses, smiles for the camera. His wife stands beside him holding a small child wearing a blue T-shirt.

James’s nystagmus story

This Nystagmus Awareness Day we’re asking you to share your story. This is James’s story.

You can share your story here

Until my son Sullivan was born, we as a family had no idea what nystagmus was, that there was a charity called Nystagmus Network and a wonderful community available for support.

We noticed within a few weeks of Sullivan being born that something wasn’t quite right with his eyes. After several doctors and hospital appointments and being told repeatedly ‘‘He’s only a baby, stop worrying’’ we finally found out Sullivan has nystagmus, with ocular albinism.

Receiving this diagnosis was hard to take. As a parent you want to do everything you can to protect them. You also have the initial shock which clouds your rational thinking – which is something I have noticed through the Nystagmus Network forums. Panic is the first reaction which is only magnified once you turn to Google – Never turn to Google!

As a few weeks passed and further appointments were made at Moorfields Eye Hospital with the incredible Maria. Maria is unbelievable. She was available for video calls and in person appointments – Maria has also supported Nystagmus Network events, so something to keep an eye out for!

Our story with the Nystagmus Network started with the Facebook Parent Forums, which provided our first chance to speak with other parents with children with Nystagmus. Its hard to explain how beneficial that was and still is today! Once meeting some of the trustees and most importantly Sue, I decided to focus on local fundraisers in Jersey with an annual Nystagmus Golf Day and I’m now proudly a trustee.

Sully is now 3, due to start pre-school this September and primary school the year after. It’s from there I feel his struggles will be more noticeable. But we will deal with them as they come. This is only the start of our nystagmus story with great things to come.

If anyone with Nystagmus is to read this, then please get in touch with the charity or myself directly!

James  

A person wearing a doctor's white coat is testing a patient's eyes using clinical equipment.

The Fight for Sight/Nystagmus Network Small Grant Award

We are delighted to announce that the Nystagmus Network has jointly awarded two new nystagmus research grant awards with our funding partners Fight for Sight.

The two successful applicants are

  • Dr Mahesh Joshi at the University of Plymouth is carrying out a pilot study to investigate whether a new computer-based treatment approach can help improve vision for people with nystagmus.
  • Dr Mervyn Thomas at the University of Leicester is developing a new experimental model that could pave the way for the development of new treatments that can help improve vision for children with nystagmus.

Vivien Jones, Hon President of the Nystagmus Network and Chair of the Research Committee, said: “We are delighted to announce with our partners Fight for Sight our support for these exciting research projects. The work by Dr Mahesh Joshi and Asma Zahidi at Plymouth will hopefully significantly enhance knowledge about eye movements and, in the case of Dr Mervyn Thomas at Leicester, lead to an enhanced ability to test treatments for infantile nystagmus.”

To help ensure that the Nystagmus Network can continue to invest in nystagmus research, please consider making a donation to our research fund. Thank you.

Donate to our nystagmus research fund here

L-R Peter Greenwood, Marsha De Cordova MP (holding Nystagmus Network T-shirt, Harshal Kubavat.

Nystagmus Care Pathway published

Publication of Clinical Practice Points for managing nystagmus in childhood


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 Clinical Practice Points, 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 Points can be found online here

The Nystagmus Network contributed to the development of the Practice Points 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 Points.

Marsha is pictured above (centre) with Nystagmus Network trustees Peter Greenwood (left) and Harshal Kubavat (right).

Richard speaks from a podium, wearing a white Nystagmus Network T-shirt.

Thank you, Richard

We are sorry to share the sad news that Richard Wilson, Chairman of the Nystagmus Network from 2011 to 2019, passed away over the Easter weekend.

Richard’s contribution to the work of the charity and the nystagmus cause is immeasurable.

His most notable achievements include our first ever clinical training day, the introduction of an annual UK nystagmus research workshop and, of course, Nystagmus Awareness Day, which we first celebrated nationally and internationally back in 2013.

Of that day Richard himself said:

“What a momentous day this has been. I am hugely proud to hold the chairmanship of the Nystagmus Network at this time. We have done something very special today. Brilliant people doing truly brilliant things. Perhaps we should do it again? But for now, let us just reflect on this success and sleep well knowing we have changed perceptions and some attitudes.”

Just a few days ago Richard urged charity trustees and staff to “Keep doing all the great stuff for the Nystagmus Network! And keep smiling.”

Thank you for everything, Richard, and we promise we will! – from all of us at the Nystagmus Network

Remembering Richard

You can click here to read more about Richard’s achievements, share your memories and make a donation to nystagmus research in his name on a special Justgiving page.

Sue wears a Nystagmus Network T-shirt and sits at her exhibition table.

Sue at VIEW

Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs).

Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms.

Sue was part of the exhibition, ensuring that teachers and support staff had all the resources they needed to signpost families to the Nystagmus Network for support and information. There was overwhelming praise for our digital guides, with ‘Wobbly Eyes‘, the booklet for young children, again proving the most popular, followed closely by ‘Nystagmus and Driving‘ and Sue took the opportunity to introduce our latest publication, the Nystagmus exams guide.

There was lots of interest, too, in our online book shop, featuring ‘Can I tell you about nystagmus?’ by Nadine Neckles and the newly published ‘She will never…’ by Amanda Harris.

In the run up to Nystagmus Awareness Day on 20 June, with our 2023 theme ‘Share your nystagmus story’ we are making available lesson plans and Powerpoint presentations for teachers and their pupils. We hope that these resources will not only raise awareness of nystagmus in schools but also help children and young people living with nystagmus feel better understood and more included.

Becky is wearing a yellow coat and stands beside a table with laptop and phone.

Parents and carers get together

Parents and carers of children and young people with nystagmus are warmly invited to our first Parents’ Get Together of the year. We are delighted to share that Becky Hyams will be joining us as our special guest. Becky is a second year university student, studying Advertising and Digital Marketing. She has nystagmus herself. She will be sharing her experiences of school, university and also how she wants to raise awareness of disability to help educate others.  Becky has created her own blog and social media accounts, ‘beckys.blurred.perspective’ to help achieve this. 

If you’d like to receive an invitation to the get together on Tuesday 21 February from 7.30pm, please email us at [email protected]

A crowded street scene, with lots of blurring so that individual faces cannot be seen clearly.

Support for visually impaired jobseekers

RNIB and BlindAmbition present a 16-week series of free weekly webinars to support visually impaired job seekers achieve the next stage in their career: finding a new role, entering employment, starting an apprenticeship, or starting up a new business. The webinars will cover a range of topics from CV writing, different ways to market yourself and interview tips. There are 16 sessions in all. You can join any or all of them. Details of the first 3 below:

21 February 19:30 How to present yourself: 

Image, body language and confidence 

Click here to register for Present Yourself webinar 

28 February 19:30 Goal setting: 

Where I’ve come from, where I am and where I am going. The importance of goal setting, why we need it, how to set SMART objectives, determine your objectives, are you on track? 

Click here to register for Goal Setting webinar 

7 March 19:30 A skills audit: SWOT analysis 

Evaluate your strengths and weaknesses, opportunities and threats, identify gaps and plan to address them. 

Click here to register for SWOT Analysis webinar
 

A young person choses a book from a shelf.

Could you help shape the direction of eye research in the UK?

Eye Research Priority Survey

Your input is needed into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities* that were first published in 2013.

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly. Knowledge from having experienced your own eye health care, or the eye health care of others, is of great value to researchers. The survey feedback will inform the final “Top 10” updated priorities across different eye subspecialties.

The Nystagmus Network is keen to see Paediatric Ophthalmology and Neuro ophthalmology prioritised.

The survey can be accessed via the QR code below, using a Smartphone or other device which connects to the internet:

Or click here to take the survey

*https://www.jla.nihr.ac.uk/priority-setting-partnerships/sight-loss-and-vision/top-10-priorities/

A poster for The Great Winter Get Together, #PlacesForConnection, 16-29 January 2023, with graphic images of a cuppa, buildings and a screen.

A winter warmer for darker days

We’re taking part in the #TheGreatGetTogether – please join us

We are hosting two online get togethers this month.

For people living with Acquired Nystagmus our online get together takes place on Wednesday 18 January from 5pm.

For people living with Congenital Nystagmus our online get together is on Thursday 19 January from 7pm.

Please join us for a chat and to brighten up a dark, wintry evening.

Everyone welcome

If you’d like to join in, please email us at [email protected] for details.

Peter Greenwood

Could you help us with Donorfy?

Volunteer Donorfy CRM Developer and Trainer

What will you be doing?

  • We need a volunteer to support our use of Donorfy to manage our membership, grant funding applications, income generated from fundraising and donations and interactions with supporters, volunteers and beneficiaries.
  • Donorfy is implemented. We need it to work for our small staff team.
  • 2 part time members of staff (support officer and fundraiser) will work with the volunteer
  • Depending on the skills and interests of our volunteer, there is lots of scope for further development of the role

What are we looking for?

Experience and expertise in implementation of a CRM (preferably Donorfy) within a not for profit organisation.

What difference will you make?

Your expertise can help us develop this small charity with huge ambitions to move on to the next level and really have an impact on the nystagmus community.

If you have relevant skills and experience, we would love to hear from you.

You can apply for our voluntary opportunity below.

All volunteer appointments are subject to a DBS check.

Apply here