News – Nystagmus Network

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.

Trustee vacancies

Are you looking for a new opportunity to put your energy, time, skills and talent to good use? Do you have the passion to support the nystagmus community in all its diversity or lived experience of nystagmus or another form of visual impairment?

If so, please consider becoming a trustee of the Nystagmus Network, a small charity with ambition to grow to meet the changing needs of the nystagmus community.

We are keen to hear from you if you have any of the following:

digital skills and organisational IT experience
professional experience in mental health support
first-hand knowledge of education and SEND
fundraising skills and experience
qualifications in benefits support
experience in clinical practice
a working knowledge of research
experience in corporate or employment law

Trustees are responsible for the strategic direction of the charity and oversee its operations. They also have legal responsibilities under charity law but no personal liability.

The full committee meets on a Saturday four times a year, alternately in person in central London and virtually via Zoom. In addition, trustees are expected to join at least one sub-committee (research, awareness, support and finance). These meet via Zoom either in the evening or daytime every 4-6 weeks. Occasionally, it is necessary for trustees to join a temporary working party to oversee an event, a project or staff recruitment.

The only other time commitments are attendance at the annual Open Day and support for Nystagmus Awareness Day.

Please contact us at [email protected] with a summary of the skills and experience you would like to offer. We will be in touch. If you would like to find out more before making a commitment, please contact us at the same email address to request an informal chat with Tim, our chair.

We welcome interest from people with and without nystagmus.

All appointments are subject to a DBS check.

Elections Bill could weaken protections for blind and partially sighted voters

Urgent update from RNIB:
The Government has put forward a draft law – the Elections Bill – which weakens protection for an independent vote for blind and partially sighted people. But there is still time to stop this from happening.

RNIB need to persuade the Government to maintain the existing law, and need your help to do it. Will you meet your MP to help maintain an independent vote for blind and partially sighted people? You can use RNIB’s simple online form to email your MP to request a meeting. Get in touch and RNIB will send you all the information you need to make your meeting a success! You can also join virtual chats with them to get tips on how to prepare. Or you can find everything you need to know on the Elections Bill on the RNIB website. You could also email your MP today using the pre-written email to MP which is available on the RNIB website.

RNIB’s latest research showed that only 1 in 5 blind voters and less than half of partially sighted voters were able to vote independently and in secret in the 2021 elections – this could get worse if the current wording is not maintained in the new Bill.

The State of the UK’s Eye Health

A NEW report paints a stark picture of the impact the Covid-19 pandemic has had on eye health in Britain – with experts warning of a ‘ticking timebomb’ and significant fallout for years to come. The State of the UK’s Eye Health 2021 report, commissioned by Specsavers in collaboration with leading eye health experts and charities, counts not only the additional financial burden now facing society but, more worryingly, the real cost to people’s sight.

With more than 4.3 million fewer eye examinations provided (a 23% drop) and more than 235,000 necessary eye hospital appointments missed or delayed throughout the pandemic, eye health experts are predicting a surge of referrals to ophthalmology services, which are already stretched. Early detection and management of eye conditions is vital so any delay could be detrimental.

Read The State of the UK’s Eye Health 2021 report on the Visionary website

Nystagmus Network wins £1,000 Movement for Good award

Nystagmus Network wins £1,000 Movement for Good award

The Nystagmus Network has won a £1,000 Movement for Good award from Ecclesiastical Insurance Group thanks to nominations from the public.

The Nystagmus Network is one of 500 winners in specialist insurer Ecclesiastical’s Movement for Good awards, which is giving £1million to charities this summer.

Although at least 1 in 1,000 people live with nystagmus, when someone is diagnosed it’s usually the first time they have heard of it. This can be a very anxious experience, especially when doctors don’t have the time to explain the full implications of the condition, which is very complex, or how it may affect the sight and offer sources of further information or support.

The £1,000 Movement for Good donation to the Nystagmus Network will pay for a year’s supply of nystagmus leaflets or postcards for eye clinics around the UK. This means that, at the point of diagnosis, patients and their families will be signposted to the charity for information and support, welcomed to the nystagmus community and be able to ask all their burning questions – and, most importantly, understand the answers!

Members of the public were invited to nominate causes close to their hearts, with 500 gifts of £1,000 available for donation. Over 13,000 charities were nominated by more than 210,000 members of the public.

Sue Ricketts, Executive Information and Development Manager at the Nystagmus Network says: “As a small charity supporting a big nystagmus community, the Nystagmus Network is grateful to each and every person who nominated us for this donation.”

Mark Hews, Group Chief Executive of Ecclesiastical Insurance Group, says: “We would like to thank every single person who took the time to nominate a good cause as part of our Movement for Good awards. Ecclesiastical, the fourth largest corporate donor in the UK, is a unique financial services group. We are owned by a charity which means all available profits can be given to the good causes that are so important to our customers. As a company whose purpose is to contribute to the greater good of society, charitable giving is at the heart of our business. We know that £1,000 can make a huge difference to the incredible work that charities do and we’re looking forward to seeing how this financial boost will change lives for the better.”

Nystagmus Network® Trade Marks

The Nystagmus Network charity name and logo are now Registered Trade Marks thanks to the advice and support of our friends Simon, Sarah, Akber and Ella at the London law firm, Fox Williams LLP.

Begun as a self-help group in 1984 and a registered charity in England and Wales since 1990, the Nystagmus Network has taken this next step to protect the integrity of the charity and provide reassurance to our members, supporters and the nystagmus community that they are interacting with a bona fide organisation.

From now on, wherever the name of the charity or the logo appear, you will see the registered trademark ‘R’ symbol alongside it. No unauthorised use of the name or logo is permitted.

Nystagmus Network^®

Introducing Ian

Ian Springett joined the Nystagmus Network staff team in January 2021.

Following a career in public service, most recently as an ECLO (Eye Care Liaison Officer) and Complaints Officer with the NHS and before that serving as a Police Officer for 30 years, Ian has settled quickly into his new role with the charity as an Information Support Officer.

Ian’s first 3 months with the charity are funded by a grant from Pears Foundation and is part of Government’s £750m charities package, granted through Pears Foundation’s trusted, long-term Partners to ensure funding gets to frontline organisations and their communities.

The Nystagmus Network is grateful to Pears Foundation for their philanthropic support.