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2024-12-31-accounts

Our vision is a world which welcomes people living with nystagmus, affords them comprehensive support and the opportunity to reach their full potential.

2024 TRUSTEES’ ANNUAL REPORT

"We never dreamed that our little help group would grow into such a big and successful organisation! Hats off to all you enthusiastic, creative, techno-brilliant people!"

N Y S TA G M U S N E T W O R K

For more information visit us online at

www.nystagmusnetwork.org or email us at info@nystagmusnet.org

"It has been such a scary time for us and the Nystagmus Network has been such an amazing support and hub of valuable information whilst navigating this challenge." - a parent

A B O U T U S

The Nystagmus Network is a registered charity in England and Wales providing support and information about nystagmus and its associated visual impairments.

The charity was established in 1984 and since then has been supporting people living with the condition and funding research, whilst also continuing to raise awareness of nystagmus.

Through the charity’s close relationship with the medical and scientific community we are driving more research, better patient care and signposting to sources of information and support.

A child in a Nystagmus Network T- shirt walks along a hospital corridor.

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TA B L E O F C O N T E N T S

04 From our founder, Vivien

08 Chair's message

10 Meet the trustees

12 What is nystagmus?

14 Our community

15 Support committee

17 A story of support

19 Awareness committee

21 23 Funding committee Research committee

28 Our impact

29 Membership

31 Treasurer's report

33 Financial accounts

34 Legal details

"Thank you for looking after us. It was a really lovely day. It was great to understand all the important work Nystagmus Network do." – an Orthoptist

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Vivien Jones MBE (right) Founder and Honorary President of the Nystagmus Network, with Lord Drayson (centre) our event sponsor, and Harshal Kubavat, trustee.

A M E S S A G E F R O M V I V I E N

In 1984 there was no internet and so no email – but the price of a first class stamp was 17 pence. Today, we have the internet, email and other forms of electronic communication – and the price of a first class stamp is £1.70.

In 1984, Mrs Thatcher was prime minister, Ronald Reagan was president of the United States and, my husband tells me, David Gower was the England cricket captain. (He also tells me the price of a pint of beer was 72 pence, but that’s enough nostalgia.)

If you're reading this, you know the answer – it's when the Nystagmus Network was founded.

The charity came about as a result of a conversation between myself and one of the leading practitioners at the London Refraction Hospital – now the Institute of Optometry – Ron Mallett.

We had taken my son Sam, born in August 1983, to him after reading a short article in a national newspaper stating that the Hospital was conducting research into nystagmus. Sam had been

diagnosed with nystagmus when he was three months old and we had struggled ever since to find out

So, what else happened in 1984?

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Face to face meetings had an important role to play in our work

information about the condition. Mr Mallett was an encouraging and kindly man and we fell to discussing the difficulty for patients and their families of obtaining information about nystagmus. I was desperate to meet others with the condition who could perhaps answer my questions. What could they see? What problems did they encounter in education or at work?

Mr Mallett and I agreed that setting up a group for people living with nystagmus was a good idea. With Mr Mallett’s help – remember this pre-dates data protection! - I contacted other patients and most replied saying they would welcome the formation

Vivien and her infant son, Sam on holiday in 1984.

of a group. The first meeting took place at the end of 1984.

So the Nystagmus Action Group was born. Subsequently we changed the name to the Nystagmus Network which seemed to better express what we were about. Largely through media coverage, we soon attracted attention from families who were as bewildered and distressed by the diagnosis and lack of support as I had been and from those with the condition who felt their needs had always been ignored. Answering their letters became the central focus.

There was a huge unmet need for support. So we started to produce leaflets. Our graphics were rudimentary – our first leaflet had stick men on the front! - but people lapped up the information.

We began to organise events, too. Nothing beats human contact. So we held Open Days once a year which were attended by large numbers of people. Just seeing the look on people’s faces as they met others who had nystagmus – often for the first time – was enough to convince me that faceto-face meetings had an important role to play in our work.

Computers and the Internet changed everything, of course, allowing us to establish much more effective – and more - attractive communications!

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That said, talking to people going through diagnosis or wanting advice or just to talk about the condition is something we have always held dear. I am very glad we maintain our telephone advisory service today.

We became a registered charity in 1990 and appointed our first paid employee in 1997. New publications and a website followed. We also developed excellent relationships with researchers and clinicians. Social media has changed how we work – we are in touch with thousands of individuals and families as a result of it.

There’s no question that the charity has moved on massively since those early days in the eighties. When I look at the website, and in particular our publications list, I am amazed at how much information is now available at the touch of a button. Covering topics such as driving, benefits and education – and many more – there is a vast amount of information ready to

Vivien's husband, Ian and their son, Sam at the Ruby Reception.

download free of charge. It isn’t just the written material that has moved on, but our accessibility – regular Zoom meetings for people to join, and regional meetings to bring people together.

Our role in supporting research – once just an aspiration – has developed over the years. We support research projects and through our research committee we maintain close links with the university and clinical world. We would, of course, like to do more but we have to live within our budget. We are grateful to those who give to us but we are forever trying to raise more money for our activities and our research!

Huge thanks are due to all those who have supported us over the years. It is because of them that the Nystagmus Ntwork has become a thoroughly professional charity – but also one that believes in personal contact.

2024 marked the 40th anniversary of our charity and we

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"I just wanted to say thank you to you and the team for organising yesterday's event. It was lovely to meet people who have been - and largely remain - a part of the Nystagmus Network story over the last 40 years and see how well things are going now." - a guest

decided we should celebrate it. Sue Ricketts, our wonderful Executive Information and Development Manager, led the way by managing to organise a reception for friends and supporters at the House of Lords last November. David Blunkett sponsored it. Alas, he was ill on the evening but Lord Drayson agreed to come in his stead and proved a charming – and interested - host. It was an evening to remember, with wonderful conversations going on everywhere. I even made a speech about the origins of the charity!

I still can’t quite believe it is 40 years since the charity got started. Much has changed in that time: I am glad we are no longer communicating by post! Sam has grown into a splendid young man. In case you wonder, he has always worked since he left university and has a very good job.

Here’s to the next 40 years!

Vivien Jones MBE

Vivien Jones

Nystagmus Network trustees, staff, friends and members were delighted when Vivien received the MBE in His Majesty's New Year's Honours list 2025 "for services to the n sta mus communit ". y g y

Founder

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Tim Cuddeford, Chair of the Nystagmus Network trustees.

C H A I R ’ S M E S S A G E

Our Ruby year was a fantastic experience. I was so pleased to be Chair during this significant milestone. It was great to hear Vivien’s heartfelt speech at the House of Lords in November, our event kindly sponsored by Lord Drayson.

The charity continues to deliver excellent support, funding research and raising awareness.

In 2024 we held very successful in-person events in Oxford, London and Sheffield and will continue this model moving forward with more regional events and support groups. If you hear of one near you, we would love to see you there. We will continue to use Zoom for larger events with a more dispersed audience eg our AGM and, of course, our very popular monthly get togethers.

Like all charities we faced financial headwinds, so I am pleased that fundraising could continue at a comparable level to previous years. Thanks to all our donors, grant givers and individual fundraisers with such varied efforts running, knitting, raffles, walking, bungee jumping, swimming, baking.

It was so good to see many representatives of our research community at the House of Lords Ruby Reception, a delight to meet the recipient of the inaugural Richard Wilson Prize and an

honour to have with us Marsha de Cordova MP, our newly appointed charity ambassador.

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Like all charities, we faced financial headwinds.

I would like to thank again all our members, supporters, fundraisers, trustees and staff for all their efforts ensuring success in 2024.

"The best bit about a big nystagmus meet up in Oxford in 2024?

Tim Cuddeford Tim Cuddeford

Chair of trustees

Meeting people with nystagmus like me for the first time in my life."

Nystagmus Network trustees and staff at the Ruby Reception with Nystagmus Network ambassador, Marsha de Cordova MP (centre).

"What a wonderful evening shared with inspiring people - from Vivien to researchers to past colleagues and chatting to everyone including yourself, who are making the magic happen every day for people affected by nystagmus. Truly life affirming, thank you so much." - a Ruby Reception guest

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TRUSTEES SERVING IN 2024

The Nystagmus Network is led by a committee of volunteer trustees. Each of them brings expertise to the table, whether from commerce, training, the law, employment, the charity sector, technology, medicine or finance. They all share a firm commitment to the nystagmus cause. Our recruitment process ensures equality, diversity and lived experience.

Tim Cuddeford Vivien Jones MBE Chair of Trustees Founder and Chair of Finance and Governance Honorary President

From the top row, left to right:

Miriam Blackburn Karen Chu, Chair of Funding Sharon Clifford Peter Greenwood, Vice Chair of Trustees, Chair of Awareness

Harshal Kubavat Vicky Pitman, Treasurer Andrew McFarlane, Chair of Support David Singleton Kathryn Swanston John Vekinis Paul Rose Hannah Donnelly

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Nystagmus Network trustees, staff and

Marsha de Cordova MP.

W H AT I S N Y S T A G M U S ?

Nystagmus is a complex eye condition characterised by involuntary movements of the eyes, where they appear to wobble or flicker.

Congenital nystagmus has a range of ophthalmological and neurological causes. It can also be a genetic condition. At least 1 in 1,000 babies in the UK are born with nystagmus.

Congenital, or infantile,

nystagmus simply means that the condition is present in early infancy. An early diagnosis will ensure the family receives support.

condition. The impact on vision varies greatly. Most people have reduced distance vision, need to be very close to print or a screen, their 3D vision may be compromised and they may struggle to recognise people. They may be registered sight impaired.

A child will learn to adapt and live with their nystagmus, but they may need support throughout their life.

Congenital nystagmus is a lifelong

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A c q u i r e d n y s t a g m u s

Nystagmus which develops later in life is called acquired nystagmus. It is often associated with another health condition such as a stroke, multiple sclerosis, brain tumour, the effect of a drug or head injury.

Anything that damages the parts of the brain that control eye movements can result in acquired nystagmus.

In cases of acquired nystagmus oscillopsia can occur, giving the impression that everything is moving. For this reason, the acquired form can sometimes be more disorienting and debilitating than congenital nystagmus.

Unfortunately, there is currently no effective cure or treatment for nystagmus of either kind, though optical, medical and surgical interventions are sometimes appropriate.

Whereas in congenital nystagmus the brain seems to adapt to the eye movements, giving a generally still image, this is not usually the case with acquired nystagmus.

The Nystagmus Network funds research into diagnostics and therapies which could have a positive impact on quality of life as well as exploring prevention and, ultimately, cure.

"Keep the good work up!" - a Newsletter subscriber

"I am sure everyone who contacts you appreciates everything that you do for us. It was my first glimmer of hope after 4 plus years of negativity from people I thought may be able to help me." - a beneficiary

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S U P P O R T I N G T H E N Y S T A G M U S C O M M U N I T Y

The Nystagmus Network provides a wide range of support by phone, email, in person and online.

Online

We provide a safe space for a thriving virtual nystagmus community.

Events

We are proud to host big meet up events around the country.

Volunteers

We offer peer to peer support and a benefits advice service.

Documents

We provide free accessible guides to all aspects of life with nystagmus.

"I had forgotten how much I get out of these meet ups and how emotional they can be." - a meet up attendee

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S U P P O R T C O M M I T T E E

"There's no substitute for 796 talking to others who know something about the condition PEOPLE and/or have experienced it." SUPPORTED – a get together attendee

Building Connections, Changing Lives

For 40 years, the Nystagmus Network has been bringing people together, creating a community where no one faces nystagmus alone. In 2024, we've expanded our reach and deepened our impact through innovative programmes, meaningful gatherings and our important support services.

Community Connections

Our year began with the winter "nystagmus get together" on Zoom, featuring our popular 1984-themed quiz — by popular demand, now established as an annual tradition. Beyond our regular monthly online meetups, we hosted in-person "big nystagmus meet ups" in Oxford, London, and Sheffield. These gatherings provided valuable opportunities to hear from experts, connect with others living with nystagmus and share strategies for living well with the condition. There were also some very tasty lunches!

building efforts was a special weekend retreat in Shropshire, made possible through the Landmark Trust "50 for Free" project. This intimate gathering fostered deep connections and lasting friendships among participants.

Youth Engagement

Thanks to our Get Set Progress intern George, partially funded by Thomas Pocklington Trust, we engaged our younger members through virtual Easter egg hunts and creative challenges, culminating in our Christmas card design competition. These activities brought joy and fun while strengthening bonds among our youngest community members.

Educational Innovation

The "nystagmus friendly learning materials" project, generously funded by The Powell Family Foundation , represents a significant step forward in our educational support. Working collaboratively with VIEW, SALT Projects Ltd and a dedicated team of parents, children,

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"A big thank you to you and all the staff at Nystagmus Network for putting on this brilliant event. The time and effort that goes into making these events work is enormous and all credit to you." - big meet up attendee

2 803 ,

DOCUMENT Guests at the DOWNLOADS Ruby Reception.

"Thanks for your support in a challenging life." – a beneficiary

teachers and QTVIs, we're developing adaptable learning resources for Key Stage One children with nystagmus. This vital work will continue through to July 2025. With thanks to everyone who has contributed to this important work.

Looking Forward

Since 1984, the Nystagmus Network has stood as a beacon of support for the nystagmus community.

Expanding Support Networks With NPC funding secured for the next three years, we're growing our peer-to-peer support through volunteer-led local groups. The "two Andys" have successfully established support groups in Oxfordshire and Manchester, with more locations planned.

As we reflect on 2024's achievements, we remain committed to our founding mission: bringing people together to support each other and feel part of a community where everyone with nystagmus can thrive. Together, we're making connection happen.

The Inman Charity's support is enabling us to launch a telephone befriending service. We hope our first volunteer callers will soon be making connections with those who need it most.

Sue Ricketts

Sue Ricketts

Sue Ricketts (EIDM) for the Support Committee

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A S T O R Y o f S U P P O R T

" T h e N y s t a g m u s N e t w o r k Z o o m c a l l s a n d m e e t - u p s a r e o n e o f t h e f e w p l a c e s I c a n b e t h e ' n e w m e ' . I t ' s t h e b e s t c a r e p l a n I h a v e . "

After over forty years of troublefree vision, out of the blue, the world I saw started to change; vertigo-like symptoms, blurred or double-vision, tinnitus, migraines etc. Sporadically at first, then over the years becoming more and more persistent and prevalent. Opticians and GPs couldn't identify a cause and my descriptions of seeing things 'moving' couldn't help. This is a very difficult condition, as a sufferer, to describe.

A long wait for a Neurology assessment resulted in (two years after symptoms started) my Acquired Nystagmus diagnosis, quickly followed by the words, "there's no cure". The shock of that! I'd never even heard of Nystagmus, now I have it and there's no cure? Many tests ensued (long waits for these too) and referrals to clinicians such as Ophthalmologists and Orthoptists (sorry, who)? One clinician told me, "something has flipped and we don't know what or why!" A refreshingly honest assessment, no assumption, no presumption or mis-diagnosis.

Fast-forward several years ... my symptoms, still with no hard evidence of cause, are permanent and fluctuate in severity throughout any day. Extra levels of stress, light levels, glare and illness etc. exacerbate everything, making this incredibly debilitating condition worse. By far the trickiest symptom for me is oscillopsia. I see everything as moving: horizontally (as if I have just stepped off a roundabout), vertically (like fast-moving credits at the end of a film) or sometimes both at once! Panic and nausea are frequent companions. My perception of what I see often massively hinders my ability to move around, focus on objects or people properly, read, write, balance and do the jobs and activities I could previously do. I had to leave my job after struggling for many years and not receiving the workplace support I needed to continue. I didn't have the energy to fight my own cause anymore. Imagine living like this...forever? There are videos of oscillopsia simulation on YouTube, which I would urge you to see, as

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this could happen to anyone at any time (not to scare but to inform). I have a long list of aids which assist somewhat with the impacts, including trials on drugs which are non-specific to my condition - with varying levels of success versus side-effects.

One huge help is knowing there are others who are going through this and can connect with each other via the Nystagmus Network, who I was fortunate enough to be told about in a random conversation with a workmate (sadly not from any clinician I had encountered).

This has been a lifeline for me, knowing others who understand what this is actually like to live with; how it lowers your confidence, stops you from taking part in everyday activities you once enjoyed and can change your identity of yourself.

I don't feel like I fit into the life I had, so the work of the Nystagmus Network to support, connect and understand those who live with nystagmus is invaluable.

Many thanks to the well-informed and dedicated team for all your work. Our Zoom calls and meetups are one of the few places I can be the 'new me'. It's the best care plan I have! My symptoms quieten in the right environment and with the right people.

More impactful than you can imagine

Eyes bleary and frantic, world spins,

Unbalanced, nausea, fatigue, ‘Wobbly’ vision, ‘drunken’ gait, Calm yourself… Family member/friend is driver and helper,

Too much traffic, too little parking.

Busy corridors, harsh lighting, Signs ‘move’, so can’t be read. Visual stress! Body and mind in perpetual flux. Calm yourself… A long, hot wait – my name is called, A weary smile, head down, reading. A knock at the door – more notes brought in. Not mine Other people’s lives intruding, impinging.

The clock ticks silently. My ‘mask of capability’ hosts an unconscious tug of war With my new, vulnerable self, Kindness and patience will tease out the latter.

Cursory checks, sometimes more thorough. Hopes deludedly high, expectations often low, Since there’s ‘no cure.’

Symptoms worse; more crossover drugs to try, Side-effects are no joke and no lure.

This is ‘your condition to manage.’ Heal yourself …

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A W A R E N E S S C O M M I T T E E "As one recently aware that I have 14k AN and not ever knowingly met anyone aware of the complaint FACEBOOK it is very reassuring there are others FOLLOWERS out there experiencing the same or similar symptoms to me. Thank you." – a new member

FACEBOOK FOLLOWERS

advice on all aspects of living with nystagmus including local services and, most importantly of all, there was the chance for attendees to meet other parents and people living with nystagmus.

Raising awareness of nystagmus is one of the key pillars of the charity. We firmly believe that the more people who know about nystagmus, the better the quality of life will be for those who live with the condition. The Awareness Committee is tasked with raising awareness.

In July, we went to London and heard from Moorfields Consultant Ophthalmologist, Maria Theodorou; we got lots of advice from QTVI (Qualified Teacher of Children and Young People with Vision Impairment) Paul from Brent Sensory Services and premiered our Ruby Year video.

As we celebrated our 40th anniversary in 2024, our awareness events and campaigns had a distinct ruby theme to them! These are some of the highlights from 2024.

Big Nystagmus Meet Ups

We continued our hugely successful ‘meet in person’ events focusing on smaller regional events to help raise awareness and encourage local support groups to be formed.

In April, we hosted a meet-up in Oxford at the Florence Park Community Centre with some great guest speakers including Ophthalmologists Jay Self and Helena Lee; Andy and Jamie from MyVision Oxfordshire provided

In September, we went to Sheffield where we were hosted by Sheffield Royal Society for the Blind. Attendees heard from Dr Gemma Arblaster, Orthoptist and Lecturer at the University of Sheffield and met some of her Orthoptics students; chatted with Tracy and Sharon, two very friendly ECLOs (Eye Care Liaison Officers) from Sheffield who told us about their services and met Chloe, a Family Support Services Officer with SRSB. We enjoyed a delicious lunch of pie and mash!

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Our Ruby stories for Nystagmus Awareness Day 2024

Vivien and Sam in 1984

Harshal in 1984

BBC Radio 4 Charity Appeal

We were once again awarded a BBC Radio 4 Charity Appeal. Presented by Gerard McDermott (actor, singer, musician, children’s author and charity super supporter), the appeal helped bring awareness to a national audience as well as raising significant funds for the charity.

2024 Nystagmus Awareness Day

Nystagmus Awareness Day serves as a reminder that we are here and our voices need to be heard. In our Ruby year, we asked people to share their stories, especially those old enough to have been around in 1984. We also went ‘looking for Ruby’, anyone celebrating a 40th birthday or anniversary. We received lots of incredible and inspiring stories which can be found on our website.

There was a ruby inspired A-Z of fundraising ideas, a children’s colouring competition and we raised awareness of the many materials available to members and supporters.

Great Get Togethers

Inspired by the Jo Cox Foundation, we held two ‘great’ get togethers with members from all our groups all together. The Winter Get Together included a highly competitive quiz (congratulations Team Congenital Nystagmus!). The Summer event included participants from as young as 2 to over 70 years. It felt good to share ideas and experiences on everything from driving to sports and even GCSEs.

Our Zoom calls

We continue to host our regular calls for parents of children with nystagmus, adults with acquired nystagmus and adults with congenital nystagmus – an amazing opportunity to meet other people living with nystagmus or supporting someone who does and a valuable chance to share experiences.

Peter Greenwood

Peter Greenwood

Peter in 1984

Chair of Awareness Committee

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F U N D I N G C O M M I T T E E

Thank you to everyone who gave to our BBC Radio 4 appeal

Our income target for 2024 was £100,000, 12% higher than in 2023 due to an anticipated rise in running costs and an ambition to continue to respond to the increase in demand for support and information whilst supporting our objectives in research.

We were just 3% under target at £97,000 for 2024, largely thanks to cash flow from prior-year grants, fundraising and donations.

2024 was a difficult year to secure grants with only one secured from Thomas Pocklington Trust for an internship. The grant success rate fell from 26% in 2023 to just 8% which was reflective of a more competitive funding environment.

Donations, subscriptions and fundraising totalled close to £63,000 and we are so grateful to all the groups, families, teams and individuals who supported us in 2024. Donations were a real highlight for the year, more than doubling the donations received in 2023, which was extra special as we were celebrating the charity’s 40th Anniversary, our Ruby Year

and that coincided with the BBC Radio 4 appeal. Thank you.

Just a few of the 2024 fundraising highlights, with thanks to everyone who sponsors, organises and pledges to fundraise.

"I am happy to donate to a charity that is making such a difference." – a generous donor

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CALLS TO OUR SUPPORT LINE

Our radio appeal presenter, Gerard McDermott and Sue with our Ruby banner at the BBC on recording day.

over £140 from her special 80th birthday lunch in December. Happy Birthday, Barbara!

Recognising the difficult funding challenges ahead, we continue to diversify our income streams, introducing a new CRM to build on funder relationships and support a new three-year fundraising strategy, exploring all possible ways to increase income in 2025 to sustain the charity and its important services.

Karen Chu

Karen Chu

Chair of Funding Committee

In 2023, we received a legacy gift from the late Mrs Rhoda Clarke, who wished to benefit children like her great niece through research. In 2024 the charity launched the Legacy Grant Award for research into infantile nystagmus.

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R E S E A R C H C O M M I T T E E

IMPROVING QUALITY OF LIFE THROUGH RESEARCH

The Nystagmus Network has invested in research since the 1990s. In 2024 we invested £27,287.

"I am thrilled to say that we have had loads of interest in this study and we are able to stop recruitment at this point, for which I genuinely can't thank you enough." – a researcher

Opening reflections

Research is one of the core priorities of the Nystagmus Network. As a charity dedicated to supporting everyone living with nystagmus, we recognise that investing in high-quality scientific research is essential to improving understanding, treatment and, ultimately, outcomes for people living with this complex condition.

Our Research Committee plays a vital role in guiding this work, ensuring that every grant we award has the potential to make a real and lasting difference. Thanks to the generosity of our supporters, we remain firmly committed to funding innovative research into nystagmus now and in the years to come.

In 2024, the Nystagmus Network marked a significant transition as Vivien Jones MBE, the charity's founder and Honorary President, stepped down as Chair of the Research Committee, appointing fellow Trustee, Harshal Kubavat.

Since establishing the charity in 1984, Vivien has been a driving force in the charity's growth and success and has been instrumental in advancing research and awareness, shaping this committee into what it is today, for which we are ever grateful. Vivien continues to serve as a trustee and Honorary President, providing invaluable support and guidance to the committee during this transition.

Harshal joined the charity as a trustee in November 2021 and is deeply committed to our mission, actively contributing to the research committee and initiatives like the Nystagmus UK Eye Research group (NUKE) and looks forward to continuing the momentum in the months and years ahead.

Our inaugural essay prize

In 2024, the Nystagmus Network proudly launched the Richard Wilson Essay Prize, an exciting new initiative designed to raise

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Nystagmus Symposium 2023

"I wanted to applaud Nystagmus Network's recognition of the International Day of Women and Girls in Science." – PhD researcher

awareness of nystagmus among early-career researchers and medical students within the UK. Named in memory of Richard Wilson OBE, Chair of Trustees (2010-2019) and a long-standing supporter of the charity, the prize aims to inspire the next generation of clinicians and scientists to take an interest in this under-researched condition. The inaugural winner this year was Justine Chan from the University of Cambridge, who impressed the judging panel with her insightful exploration of the genetic basis of nystagmus - research that has already

influenced her decision to pursue a career as a clinical academic. By encouraging curiosity, promoting excellence, and showcasing promising new voices

in the field, the Richard Wilson Essay Prize helps ensure that nystagmus remains a visible and compelling subject for future research. Initiatives like this are central to our goal of driving forward understanding, treatment and support for everyone living with nystagmus.

Increasing reach and visibility

Over the past year, the Nystagmus Network has continued to build and strengthen its collaborations with researchers, clinicians, and the wider vision science community - both in the UK and internationally. A key highlight was the

International Nystagmus Symposium 2024, held online in October and attended by 89 delegates from 13 countries, including Australia, the USA, India, and the Netherlands.

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R E S E A R C H, continued

Richard Wilson Essay Prize 2024 winner Justine Chan (centre) with Jackie and Claire Wilson at the Ruby Reception.

With presentations from seven expert speakers - spanning patient experience, genetic research, clinical studies, and treatment pathways, the symposium showcased the breadth and depth of current nystagmus research. Of note, Chris Harris delivered a thoughtprovoking talk titled “Ocular Motor Reciprocal Innervation Holds the Clue for INS”, offering fresh insights into the neural mechanisms behind infantile nystagmus and sparking valuable discussion among delegates. Additionally, Actor and charity ambassador Gerard McDermott (who supported us in the BBC Radio 4 Charity Appeal this year) provided a moving patient perspective and we were proud to introduce the inaugural Richard Wilson Essay Prize winner, Justine Chan, who shared how her research had inspired her to pursue a clinical academic career. Symposium recordings were made available to healthcare professionals and academic researchers on our YouTube

channel for continued future training and outreach.

In addition to the symposium, the charity hosted its annual Research Workshop in November 2024, providing a space for in-depth discussion and reflection on their current UK-based studies and research priorities and the potential impact this may have on our community. This workshop also brought together our core group of experts to help shape future nystagmus research strategy and aimed to produce a short position statement on the state of nystagmus research in the UK, which we hope to publish in 2025. Both events underscore our commitment to fostering collaboration and knowledge exchange across borders and disciplines, ensuring that the voices of patients and families remain central to scientific progress.

Partnerships

The Nystagmus Network continues to work in close collaboration with the Nystagmus UK Eye research

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group (NUKE) - a partnership that remains central to our mission to advance understanding and improve care for people living with nystagmus. This year, NUKE has been instrumental in shaping the nystagmus UK research landscape, for example through projects such as the development of a more meaningful way to measure visual function in individuals with nystagmus - a challenge that has long perplexed clinicians and patients alike. Led by Dr. Helena Lee, with input from multiple NUKE centres, this ambitious project aims to go beyond standard visual acuity tests to better reflect real-world visual experience, and is currently seeking funding from research bodies. The group also continues to support innovation in diagnostics, with research like the RETeval project, exploring whether hand-held tools can reduce waiting times for diagnosis compared to traditional imaging. Members of NUKE regularly contribute to key Nystagmus Network initiatives, including cochairing the International Symposium and advising on small grant schemes, while also supporting the development of resources such as the proposed patient leaflet to accompany the Royal College of Ophthalmologists’ Practice Points. This enduring partnership ensures that clinical expertise, patient insight and academic rigour remain at the heart of all we do.

Our longstanding partnership with Fight for Sight also continues to play a vital role in our research efforts. As the UK’s leading eye research charity, Fight for Sight shares our commitment to improving the lives of people affected by nystagmus through scientific discovery. This year, we were pleased to see the restart of the joint-funded PhD studentship with Dr Frank Proudlock at the University of Leicester, a project which had previously been delayed but is now making encouraging progress. In addition, our Small Grant Award scheme, run in partnership with Fight for Sight, received two strong applications that were both deemed fundable: an exciting milestone. The successful projects are based at Cardiff University, where Dr. Lee Mcilreavy is investigating the cortical organisation of visual acuity and eccentricity in infantile nystagmus, and at the University of Southampton, where Dr. Eloise Keeling is exploring the use of benzophenones as a potential treatment for Oculocutaneous Albinism Type 1 (OCA1), a condition often linked with

nystagmus. These collaborations demonstrate the powerful impact we can achieve when working together, and we are proud to partner with Fight for Sight to fund high-quality, innovative research that moves us closer to better outcomes for everyone living with nystagmus.

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R E S E A R C H, continued

In 2024, we began the process of identifying a suitable project to receive a special legacy-funded research grant, thanks to a generous bequest from the late Rhoda Clarke, affectionately known to us as “Aunt Rhoda.” Her remarkable gift of £32,000 was ring-fenced for research into congenital or infantile nystagmus— a condition that affected her family. Throughout the year, the Research Committee has carefully considered how best to honour this legacy, ultimately deciding to invite direct applications from UKbased researchers for imaginative and forward-thinking proposals. With the application window running from September to December 2024, we look forward to commissioning a new research project in early 2025 that will continue Aunt Rhoda’s wish to improve understanding and treatment of nystagmus for generations to come.

From 2024 to 2025 and beyond Looking back on 2024, it is clear that our research activities continue to go from strength to strength. This year has been marked by fresh ideas, renewed partnerships and the nurturing of a new generation of researchers. From the success of our first-ever Richard Wilson Essay Prize to the

Our partnership with NUKE remains central to our mission

relaunch of our PhD studentship and the awarding of two promising small grants, our commitment to funding meaningful and innovative research is stronger than ever. We continue to place collaboration at the core of our work - whether through partnerships or by bringing together voices from across the globe at our International Symposium. Above all, we remain guided by the lived experiences of those with nystagmus and/or their families, ensuring that their voices are heard and their needs are reflected in the research we support. As we look ahead to 2025, with further strategic planning underway and through our advocacy and championing of new initiatives, we hope to make further connections within the research community networks, expanding beyond research centres and looking towards the intersection of industry and academia to ensure that our work translates into meaningful future interventions.

Harshal Kubavat

Harshal Kubavat

Chair of Research Committee

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O U R I M P A C T

The Nystagmus Network is run by trustees, staff and volunteers with lived experience to ensure we represent the voice of the nystagmus community

In 2024 we continued to work hard to fulfill our goals: supporting the nystagmus community, raising awareness, funding research.

Awareness

Communication

Research

We celebrated Nystagmus Awareness Day and delivered 3 big meet ups

Daily Facebook and Instagram posts helped us reach an audience of 15,000 people

We held an international symposium and invested £27,287 in research projects

Support

Fundraising

Information

We answered 796 enquiries from adults, parents, teachers, clinicians and eye care practitioners

Our supporters found all sorts of ways to raise £33,419 and we secured £34,147 in grants.

2,803 people downloaded our digital guides to living well with nystagmus.

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M E M B E R S H I P

A long-standing member chats with Marsha and Vivien at the Ruby Reception.

Nystagmus Network trustees have chosen to run the charity on a membership model, as this brings sustainability, enables sound financial planning and empowers us to grow.

As the representative body of a community of people living with the condition we can make sure that our voice is heard in education, research and funding.

"I just wanted to say a huge thank you for the time you took to give me the advice about where to look to get an assessment for my son who has nystagmus, going into his A levels. Our local visual impairment team were excellent and had done the assessment within a few days of me contacting them. This would not have happened without your guidance of where to start. Many, many thanks." – a arent p

29

contd.

"Please keep up your much needed work. We could not manage without people putting in the effort like you do." – a beneficiary

Isn’t it great, feeling you belong, that you’re part of a wider community, all working towards the same goals?

That’s why the Nystagmus Network is a membership organisation. The more people we represent, the stronger the charity’s influence and the louder our voice.

Together we can make real difference

Membership benefits include:

We offer affordable membership to anyone living with nystagmus.

PARTNERSHIPS

The Nystagmus Network is a member of NUKE, Visionary and the Alliance and works closely with QTVIs, ECLOs and Eye Care Practitioners and alongside other sight support charities to ensure everyone living with nystagmus receives the help they need.

ACHIEVEMENT

The Nystagmus Network shares and celebrates every success members of the nystagmus community achieve.

CAMPAIGNS

The Nystagmus Network is committed to raising awareness of nystagmus to improve the quality of life of everyone living with the condition.

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T R E A S U R E R ’ S R E P O R T

2024 has been a year of resilience and commitment. While financial challenges persisted, our incredible community of supporters, donors and volunteers continued to show their dedication, allowing us to push forward with our important work.

Income

We raised £97,419 this year - 20% lower than 2023’s £122,841, but still a testament to our supporters’ generosity. A standout success was the sharp rise in general donations, which more than doubled to £18,588. However, we did not receive any legacy donations this year (£32,115 in 2023). Fundraising efforts remained strong at £33,989, while grants totalled £28,260 and membership subscriptions remained stable at £10,271.

Investing in our mission

Expenditure increased to £116,074 (from £68,632), largely due to a £27,287 investment in research, a crucial step forward in our commitment to advancing knowled e and treatment. g

Support services also expanded to £31,755, ensuring we continue to provide direct support to those who need it most. We also proudly welcomed a sight-impaired intern, cofunded by the Thomas Pocklington Trust, furthering our commitment to inclusion and opportunity.

Financial position and looking ahead

We ended the year with a £18,655 deficit, mainly as a result of spending restricted funds received prior year. Unrestricted funds remained stable with only a £1,955 deficit. Our reserves now stand at £101,632, with £61,517 in general funds, meeting our six-month reserves policy.

contd.

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The road ahead will require creativity and determination. We are actively seeking new grants, partnerships, and innovative fundraising initiatives. With continued support, we remain optimistic that we can navigate these challenges and continue to make a lasting impact.

Vicky Pitman FCA Vicky Pitman Treasurer

Vicky, treasurer, chats with a volunteer and one of our longstanding members and supporters at the Ruby Reception.

"From the bottom of my heart, thank you. Thank you for holding the events and allowing people like myself to meet other people and hear their stories. It was the first time I met anyone else with nystagmus and to know that I’m not alone means more than you’ll imagine."

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FINANCIAL ACCOUNTS 2024 Nystagmus Network - Financial Accounts 2024 2024 2023 Unrestricted Funds Restritted Fund5 Total Fund5 Total Funds Receipts Fundrai51ng Grants Legacies General Donations Subscriptions Shop Sales Events Bank Interest 33.989 17,5 33.989 28,260 35.857 31,600 32,115 7,oog 10,675 2.250 2,306 1,029 122.841 10,760 18,588 10,271 2,486 1,207 2,617 86,659 18,588 10,271 2,486 1,207 2.617 97,419 10.760 Expendlture Income generation costs Support 5ervice5 Office and Administration Research 24,703 4,295 25,133 27,287 24,703 31,755 25,133 27.287 60 24.901 21,610 17,972 27,460 Trustee expenses Events 7,136 88,614 7,136 116,074 4,149 68,632 27,460 Net Surplu5llDeficit} for the year -1,955 -16,700 -18,655 54,209 TotulStaff costs included above £73.071 £52,944 Reserves b/f Movement in year Reserves clf 63,472 1,955 61,517 56,815 16.700 40,115 120,287 18,655 101,632 66,078 54.209 120,287 Statement of Assets and Llabllltles Cash funds 61,517 40.115 101,632 120,287 Account5 Prepared by Ofjf icky Pltman FCA ITreasurerl Accounts Examlned by L i£ Andrew Black ACA 33

L E G A L D E TA I L S

Charity objects

The charity’s objects focus on the relief of nystagmus (visual impairment sufferers and their families. The objects also focus on advancing the education of the public in and to promote research into the condition known as nystagmus and to publish the useful results of any such research which the charity has funded.

Appointment of trustees Trustees are recruited in line with our equality and diversity

policy and to reflect lived experience of nystagmus. They are appointed after a thorough interview process. Induction includes immersion in the

Charity Governance Code and charity policies and procedures. Introduction to the work of the charity is through peer to peer training via our subcommittees.

Trustees’ responsibilities

Trustees are responsible for the preparation of financial statements for each financial period which give a true and fair

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Exams guide

Nystagmus is ... a guide for adults

view of the charity’s incoming resources and application of resources during the year and of its state of affairs at the period end. In preparing these financial statements the trustees are required to do the following:

Risk

The trustees take risk management seriously and have a live risk register in place which is regularly reviewed and updated.

Signing of the Trustees’ report

On completion of this report one of our trustees is required to sign that the information contained within it is both accurate and a true reflection of our work.

Tim Cuddeford

Tim Cuddeford

Chair of Trustees

Benefits guide

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"A big thank you to you and all the staff at Nystagmus Network for putting on this brilliant event. The time and effort that goes into making these events work is enormous and all credit to you.

I met some lovely people and learned a lot. The two researchers were excellent speakers. I have been very appreciative all these years for your organisation. Thank you."

– a parent

N Y S TA G M U S N E T W O R K

M O R E I N F O R M AT I O N

For more information visit us online at nystagmusnetwork.org

or email us at info@nystagmusnet.org.

Nystagmus Network - Financlal Accounts 2024 2024 2023 Unrestrlrted Funds Reslrlcted Funds Totsl Funds Total Funds Receipts Fundraisln8 Grants Legacles General Donations Subscriptkns Shop Sales Events Bank Interest 33.989 17JKI 33.989 28.260 35.857 31,6(K) 32,115 7,009 10,675 2,250 2,306 1,029 122.841 10.760 18,588 10,271 2.486 1.207 2.617 86,659 18.588 10.271 2.486 1.207 2,617 97.419 10.760 Expendlture Income generation costs Support seTrlces Office and Admin15tratlon Research Trustee expenses Events 24.703 4.295 25,133 27.287 24.703 31,755 25,133 27.287 24,901 21,610 17,972 27.460 7.136 88,614 7,136 116,074 4,149 68,632 27,460 Net Surplus/(Defktt) for the yur -1,955 -16.71)) -18,655 54,209 rotalstoff costs included above É73.071 £52.944 Reserves blf Movement in year Reserves clf 63.472 1,955 61.517 56.815 16,700 40.115 120.287 18,655 101,632 66,078 54,209 120.287 Statement of Assets •nd Uabllltles Cash funds 61,517 40.115 101,632 120,287 Accounts Prepared by Vl¢ky Pltman FCA (Treasurer) Accounts Examlned by Andrew Black ACA

CHARITY COMMISSION FOR ENGLANO AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the Irustees ISf￿￿￿S On accounts for the year ended 31° bEceM8£L Charity no (If any) 118 p4So Set out on pages I report to the trustees on my exatnination of the accounts of the al)ove charity (Ihe Trust.) for the year ended Responslbllltles and basis of report As the chariws trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Acl 2011 {"the Act.). I report in respec* of my examination of the Trust's accounts carried out under section 145 of the 2011 Act and in carying out my examination. I have followed all the applicable Directions given by the Charity CommFssion under section 145(5){b) of the Act. Independent tThe charity's gross income exceeded £250.000 and l am qualtfied to examiner's statement undertake the examination by being a qualffied member of linsert name of applicable listed bodyll. Delete I l rfnot 8ppIic8ble. I have completed my examination. I confimi that no material matlers have come to my attention in connection with the examination (other than that disctosed below ") which gives me cause to believe that in, any matèrial respect: the accounting records were not kept in accDrdance wtth section 130 of the Charities Act., or the accounts did not aco)rd with the accx)unting records; or the accounts did not comply with the applicable requirements conceming the fom and content of accounts set out in the Charities {Ac￿unIS and Reports) Regulations 2008 other than any requirement that the accounts give a 'true and fairf view which is not a matter considered as part of an independent examination. I have no concems and have come auoss no other matters in connection wth the examination to vthich attention should be drawn irF this report in order to enable a proper understanding of the accounts to be reached. . Please delete the words in the brackets rf they do not apply. Signed: Date: Name: Relevant professional qualification(s) or body Al£5 IER Oct 2018

(if any): Address: 91> SYZ7 Section B Disclosure Only complete if the examiner needs lo highlighl mateiial matters of concern (see CC32, Independent examination of charity accounts.. directions and guidance for examiners). Give here brief details of any items that the examinerwishes to disclose. IER Oct 2018