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.”
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.
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 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.
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
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.
Nystagmus Network’s Sue is proud to have played a small part in the work behind a new report, published by NPC today, into the lack of funding for visual impairment.
The key headlines of the report:
Our message
Funders should give more money to medical research and systemic change to achieve greater long term impact for people living with sight loss.
Eyesight is the sense people fear losing the most. Many consider it to be unpreventable, untreatable, even inevitable, meaning treatment is often sought too late. By giving more to medical research and working towards societal and policy change, funders could achieve greater long term impact for people living with sight loss.
Philanthropy context
At present, most money goes to services which improve quality of life – just 3% goes to research. These services are vitally important, but we shouldn’t neglect medical research and working towards systemic change – especially early stage research and areas where there is little profit incentive for pharmaceutical companies.
Most charitable funding for visual impairment comes from legacies, fundraising appeals, subscriptions, government contracts, and the Lottery. It does not seem to be a popular cause among trusts, foundations, or philanthropists, with very few dedicated funding streams. More philanthropic funding therefore has the potential to make a huge difference in this sector.
Giving more to medical research and systemic change needn’t be at the expense of frontline services. The visual impairment charity sector is small compared with other health sectors. The combined income of its top 16 charities is less than that of the single biggest cancer charity. There’s plenty of room for growth.
We’ve published this review of the visual impairment sector to help funders better target their giving. For any issue you need a healthy balance between reactive and preventative work. There is a trade-off between having a relatively certain impact on a small number of people in the short term and having a much less certain impact on a huge number of beneficiaries (at the medical, society, or policy level) in the long term.
Policy context
The overall visual impairment sector in the UK is complex, overlapping with different aspects of the healthcare system, social care, and many other sectors – and there is no national strategy for eyecare.
Facts about visual impairment
More than two million people in Britain live with sight loss severe enough to significantly impact daily life, with the number expected to double by 2050. Of this, around 340,000 are registered blind or partially sighted. The leading causes are age-related macular degeneration (48%), glaucoma (16%), cataract (12%), retinitis pigmentosa (10%), and diabetic eye disease (8%).
About this research
This research covers six areas where philanthropic funding could make a difference: children and young people, working-age adults, older people, mental health and isolation, disabilities and learning difficulties, and medical research. It examines what the NHS and local government are already doing, and where philanthropy can add value.
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.
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 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).
Your chance to influence the direction of UK nystagmus research
NUKE is the Nystagmus UK Eye research group. Members are currently researchers, clinicians, academics and patient support groups, including, of course, the Nystagmus Network.
Mission Statement
NUKE brings together the leading clinical and scientific expertise, experience and resources across the UK. Supported by patient groups we work to raise the profile of nystagmus and attract research funding. By collaborating and sharing data and ideas we aim to achieve the best possible clinical outcomes for patients, including the development of a Nystagmus Care Pathway.
As work on the Nystagmus Care Pathway is now complete, pending approval by the Royal College of Ophthalmologists, NUKE plans to work on a new project. We would like to hear your views on where to focus our energies.
To voice your priorities for nystagmus research in the UK for the next two years, please take part in this short survey. Thank you.
A Nystagmus Champion is someone who goes above and beyond to raise awareness of the condition, to raise funds or generally make life better for people living with nystagmus.
The Nystagmus Champions of 2022, announced at our virtual Open Day on 1 October are:
Lucy
Mum to Maisie and partner to Myles, we’re sure it’s no surprise to them that Lucy has been nominated as a Nystagmus Champion for her baking skills. We’re no Paul or Prue, but we know that there must be something very special about Lucy’s cakes and about Lucy, herself. Earlier this year, Lucy took on a 12-hour bake-a-thon, making everything from Lemon Drizzle cake to chocolate brownies. She did get Maisie’s nursery to join in, too, but baked most of the cakes herself, making full use of her two ovens at home. She raised a lot of awareness and a phenomenal £2,000. Well done, Lucy! And thank you!
Khalil
Back in June we took a call from an enthusiastic young man. He said he’d like to take part in Nystagmus Awareness Day and could we please send him some T-shirts. This was Khalil. As we chatted, he revealed that he had nystagmus himself. He also shared that he was the Assistant Manager of the Leicester branch of Specsavers. What a tremendous achievement! Khalil has been nominated as a Nystagmus Champion of 2022 for persuading his entire staff team to wear Nystagmus Network T-shirts and wristbands on Nystagmus Awareness Day and sharing the photos across the local press and social media. Thank you, Khalil. We are so grateful for your support.
Tracy
2022 was not the first time that Tracy chose to do something energetic for the nystagmus cause. But this time it was particularly strenuous. She took part in the full Ironman. If you’re not sure what that is, it’s a 2.4 mile swim, followed by a 112 mile bike ride, followed by a 26.2 mile run. Yes, that’s right. That last bit is a marathon! Despite picking up a knee injury in training, Tracy completed the challenge and raised £1,500 in the process, making her family and especially her son, Alfie, very proud indeed. Thank you, Tracy for all the energy. You are a Nystagmus Champion.
Charlie
7-year-old Charlie has nystagmus. He’s also a huge football fan and one to watch for the future, we think. When his cub team were looking for sponsorship for their kit, young Charlie decided to write to his Mum’s bank. They would have plenty of money! Luke, the bank manager took part in a triathlon and raised the sum needed, but then he asked Charlie to nominate a charity whose logo should appear on the kit. And this is how the boys got their Nystagmus Network sports tops. And don’t they look smart! We’re not sure how the tops have helped with goal scoring, but we’re sure that Charlie has a stellar career ahead of him. Congratulations, Charlie.
Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes
When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry.
Now, aged 21, and assistant manager at Specsavers Leicester, Khalil wants to raise awareness of nystagmus, the condition he has lived with for most of his life, alongside building a career in optics.
On Nystagmus Awareness Day 2022, Khalil and his entire staff team donned Nystagmus Network T-shirts and wristbands to raise awareness of nystagmus and support the work of the charity.
For his tremendous support, raising awareness of nystagmus and to honour his career success, the Nystagmus Network has nominated Khalil one of the ‘nystagmus champions’ of 2022. Join us to celebrate Khalil and all the nystagmus champions of 2022 at Open Day.
Khalil’s inspiring story has been told in local press articles in print and online.
