Retina UK supports people affected by inherited progressive sight loss and invests in medical research to ensure that people an lead a fulfilling life, now and in the future.
Professor Robin Ali, Director of the Centre for Gene Therapy & Regenerative Medicine, KCL.
Tina Garvey, Chief Executive, Retina UK.
Stories from some of our fantastic fundraisers.Jess Mortlock, Interim Director of Income Development. Tam Sanford and Lisa Sanford, who have a child living with inherited sight loss.
Our panel of experts share their professional and personal experience to bridge the gap between cutting-edge innovation, including AI, and everyday reality.Barrie Lane, Tech Advisor at Beacon Centre. Keith Dear, Tech Advisor at Sight for Surrey. Mark Baxter, Information and Support Coordinator, Retina UK. Anna Holloway and Ellie Dowdy, Retina UK Tech Peer Support Group volunteers.
Tina Garvey, Chief Executive, Retina UK. Professor Martin McKibbin, Consultant Ophthalmologist, University of Leeds. James Moore, who is living with inherited sight loss. Bhavna Tailor, Chief Executive, Stargardts Connected and Ethan Tailor, who is living with inherited sight loss.
A panel with representatives from biotechnology companies Sepul Bio, Alkeus and AAVantgarde.
Tina Garvey, Chief Executive, Retina UK.
Dr Henry Stennett, Senior Research Coordinator, Retina UK, Mark Baxter, Information and Support Coordinator, Retina UK. James Moore, who is living with sight loss
A panel session with members of our community. Paula McGrath, Deputy Chief Executive, Retina UK
Professor Susan Downes, Consultant Ophthalmologist Oxford Eye Hospital and Honorary Clinical Senior Lecturer at Oxford University. Dr Amanda Salisbury, Consultant Clinical Oncologist at Oxford University Hospitals NHS Trust. Clare Abbott, Senior Eye Clinical Liaison Officer
Our panel of experts share their professional and personal experience to bridge the gap between cutting-edge innovation, including AI, and everyday reality.Barrie Lane, Tech Advisor at Beacon Centre. Keith Dear, Tech Advisor at Sight for Surrey. Mark Baxter, Information and Support Coordinator, Retina UK. Anna Holloway and Ellie Dowdy, Retina UK Tech Peer Support Group volunteers.
Tina Garvey, Chief Executive Retina UK
Our monthly e-Newsletter featuring the latest updates from Retina UK.
More information about our Professionals' Conference 2026 can be found on our website: RetinaUK.org.uk/event/professionals-conference/
More information about our Annual Conference 2026 can be found on our website: RetinaUK.org.uk/event/annual-conference/
This is the audio edition of the Retina UK Newsletter, Look Forward - Autumn 2026 (Issue 191). You can download a copy in PDF and Word format on the Retina UK website: https://retinauk.org.uk/resources. Contents in this edition are as follows:We're counting the days until our conferencesFree CPD-accredited conference for professionalsRetina UK Annual ConferenceNutrition and inherited sight loss, promise vs proofThank youChallenge yourself, change livesResearch news round-upVolunteering, technology and community: Making a difference at Retina UKBringing us closer to effective treatmentsLiving life in full colour: Meet Tilly DowlerDates for your diaryPAID ADVERTISEMENT: Turn night into day - LunaPAID ADVERTISEMENT: Ran-Ban | Meta WayfarerDonate to Retina UK this autumn
In this session, our speakers will explore what it means to navigate early adulthood with a visual impairment, offering insights into key areas of life including hobbies, friendships, travel, employment and being involved with Retina UK.This is a opportunity to hear real stories, learn from lived experiences, and gain practical perspectives on building independence, maintaining connections, and embracing opportunities.We will also be joined by Robert Quinn, CEO of MakeSense. MakeSense is developing the worlds first ultra precise navigation technology for people with sight loss.Whether you are personally affected by inherited sight loss, supporting someone who is, or simply looking to better understand these experiences, this webinar promises to be informative and uplifting.What to expect:Personal stories from young adults living with inherited sight lossInsights into everyday life, from social connections to travelPerspectives on getting involved with Retina UKAn opportunity to feel inspired and connected
Find out more about the difference we made in 2025.This report is also available in PDF and plain text (Word) formats on the Retina UK website: RetinaUK.org.uk/resource/impact-report-2025/
In this episode of Meet the Professionals, Eve speaks with Professor Marcela Votruba, Professor of Ophthalmology at Cardiff University and Consultant Ophthalmologist at University Hospital Wales, where she leads a specialist genetic eye clinic.Together, they explore the vital role ophthalmologists play in diagnosing and supporting people living with inherited retinal diseases. Marcela explains the differences between ophthalmologists and optometrists, how referrals work, what happens during the diagnostic process, and the range of tests used to diagnose inherited retinal conditions.The conversation also covers what support is available following diagnosis, why some patients are discharged from regular ophthalmology care, when re-referral may be appropriate, and how ophthalmologists collaborate with researchers, genetic counsellors, Eye Care Liaison Officers (ECLOs), rehabilitation specialists and other professionals.This episode offers valuable insight for anyone living with inherited sight loss, supporting a loved one, or wanting to better understand the clinical care pathway and the professionals involved.
Our monthly e-Newsletter featuring the latest updates from Retina UK.
Our latest Meet the Professionals podcast is here, and this month we're joined by Danielle Wise, a Qualified Teacher of Multi Sensory Impairment (QTMSI). Danielle supports children and adults with both sight and hearing loss, helping them communicate, learn, and navigate the world with confidence. In this episode, we explore what MSI really means, how support is tailored to each person, and why early intervention and specialist guidance can make such a powerful difference. A must‑listen for anyone interested in sensory support, education, or lived experience of sight loss. Listen now.
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2026 (Issue 190). You can download a copy in PDF and Word format on the Retina UK website: https://retinauk.org.uk/resources. Contents in this edition are as follows:Conference invitation - Tina GarveyHats off to our incredible volunteers - Tina GarveyTickets are selling fast for our Gala DinnerFinding connection through storiesBook your place for our Annual ConferenceFree CPD-accredited conference for professionalsPaid advertisement: MiniVision2+ Paid advertisement: Optaro XL#TeamRetinaUK makes a splashResearch news round-upDates for your diary50th anniversary year round-upFinding purpose through communityStart bidding today!Annual General Meeting noticeThanks to youDonate to Retina UK this summer
In the latest episode of our Meet the Professionals podcast, we speak with Louise Gow, a low vision specialist and the Head of Eye Health, Optometry and Low Vision at RNIB. Louise has dedicated her career to helping people make the most of their remaining vision and ensuring that low vision services across the UK are effective, accessible and person‑centred.During the conversation, Louise explains what low vision support involves, how assessments work, and the practical tools and strategies that can make a real difference to everyday life. She also discusses how low vision specialists collaborate with other professionals across the sight loss sector, highlights common misconceptions, and shares her thoughts on emerging developments in the field.This episode offers valuable insight for anyone living with inherited sight loss, as well as for family members, friends and professionals who want to better understand the role of low vision support.
In this episode of Meet the Professionals, Lauren speaks with Richard Bounds, Vision Rehabilitation Specialist and CEO of the Rehabilitation Workers Professional Network (RWPN). Richard shares his journey into the profession, explains the vital role rehabilitation specialists play in supporting people with sight loss, and explores how RWPN champions and strengthens the workforce behind this service.Together, they discuss what rehabilitation support looks like in practice, when someone might be referred, how goals are set, and why personalised, flexible support can make such a difference for people living with inherited retinal conditions. Richard also reflects on the future of the profession and offers advice for anyone feeling unsure about reaching out for help.Whether you're living with sight loss, supporting someone who is, or simply want to understand more about the sector, this episode offers valuable insight into the people and expertise behind rehabilitation services.
Understanding what happens during an optician appointment can make a real difference for people living with inherited sight loss. In this webinar, taking place on Wednesday 22 April at 7pm on Zoom, we'll explore the vital role opticians play - from early detection and regular monitoring to low‑vision support and onward referrals.We're delighted to be joined by Ashish Chokshi, Principal Optometrist, Optometry Lead for Medical Retina, Moorfields Eye Hospital NHS Foundation Trust, and a community optician practice owner. Ashish will share his clinical and community‑based insights into how opticians support people with inherited retinal conditions and what you can expect during appointments. We will also be joined by two of our volunteers with lived experience, who will also share what has helped them feel more confident in clinic settings, as well as why some people may feel hesitant about attending.This webinar is designed to give you practical insights, reassurance and a clearer understanding of why routine eye care matters.
In the latest episode of Meet the Professionals, we sit down with Kate, an d Eye Clinic Liaison Officer (ECLO), to explore the vital role ECLOs play in supporting people through every stage of their sight loss journey.From helping individuals navigate the emotional impact of diagnosis to offering practical guidance on registration, benefits, and local services, ECLOs are a crucial bridge between clinical care and everyday life. Kate shares her path into the sight loss sector, what a typical day looks like, and the many ways she works alongside clinicians, families, and support organisations to ensure individuals with sight loss get the support they need. Whether you've met an ECLO before or are hearing about the role for the first time, this conversation offers insight, and practical advice for anyone living with inherited sight loss or supporting someone who is.If you'd like to learn more about ECLO support or the services mentioned in this episode, you can contact the Retina UK Helpline on 0300 111 4000 or helpline@RetinaUK.org.uk. Our volunteers all have lived experience of inherited sight loss and are here to help.
In this episode of Meet the Professionals, Lauren speaks with Richard Bounds, Vision Rehabilitation Specialist and CEO of the Rehabilitation Workers Professional Network (RWPN). Richard shares his journey into the profession, explains the vital role rehabilitation specialists play in supporting people with sight loss, and explores how RWPN champions and strengthens the workforce behind this service.Together, they discuss what rehabilitation support looks like in practice, when someone might be referred, how goals are set, and why personalised, flexible support can make such a difference for people living with inherited retinal conditions. Richard also reflects on the future of the profession and offers advice for anyone feeling unsure about reaching out for help.Whether you're living with sight loss, supporting someone who is, or simply want to understand more about the sector, this episode offers valuable insight into the people and expertise behind rehabilitation services.
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2026 (Issue 189). You can download a copy in PDF and Word format on the Retina UK website: https://retinauk.org.uk/resources.Contents in this edition are as follows:A heartfelt thank you for standing with us (Tina Garvey)Staying connected: Small changes, big impactJoin us for the grand finale to our 50th anniversary year!Research news round upTwo journeys, one desertVolunteer spotlight: Building peer support in the South-WestStepping onto the career ladderGene therapy to restore and maintain visionPAID ADVERTISEMENT: Turn night into day – LunaPAID ADVERTISEMENT: New! Optaro®Thank youHave fun and make a difference for people with inherited sight lossGive the gift of hope through a regular donationDates for your diaryDonate to Retina UK this spring
In this opening episode of our Meet the Professionals series, Lauren speaks with Sian, a Genetic Counsellor supporting people living with inherited retinal conditions. Together, they unpack what genetic counselling involves, how it can help individuals and families understand their diagnosis, and what to expect from the genetic testing process.Sian discusses her background, the emotional and practical support she provides, and the types of questions people often bring to their appointments. She also explains how genetic counsellors work alongside clinicians, researchers, and organisations like Retina UK to ensure people receive the information and care they need.If you're considering genetic testing or want to understand more about the role of a Genetic Counsellor, this episode offers clear insight.You can find out more information on genetic testing here: Unlock Genetics - Retina UK
In “Steps Through the Sand: stories from the Retina UK Sahara Trek”, you'll hear firsthand from some of our amazing trekkers who took on this once-in-a-lifetime challenge – trekking across the vast Sahara Desert to raise vital funds and awareness for people affected by inherited sight loss.Our speakers share their personal stories, memorable moments, and the highs and lows of life in the desert, from the blazing dunes to the powerful sense of teamwork and purpose that carried them through.Whether you're curious about taking on your own adventure, want to relive the journey, or simply love hearing uplifting stories of courage and community, this is an event not to miss.
In this Retina UK podcast, Research Development Manager Kate Arkell is joined by Laura Taylor, Research Optometrist with the Oxford Eye Research Group, and Randa Li, Ophthalmologist at Moorfields Eye Hospital, to explain the wide range of tests used in the diagnosis and monitoring of inherited retinal diseases (IRDs).Across the discussion, Laura and Randa address common misconceptions, practical tips for preparing for appointments, and the importance of regular monitoring. The episode aims to give listeners the knowledge and confidence to understand their test results and engage actively in their care.
Joining us for an "Ask the Expert" session is Professor Marcela Votruba, Professor of Ophthalmology at Cardiff University and consultant at University Hospital Wales where she runs a genetic eye clinic.During the session, participants had the opportunity to ask questions submitted in advance as well as engage in a live Q&A. The discussion covered a wide range of topics, from personal concerns to the latest developments in ophthalmology research.Thank you to everyone who joined us and contributed to such an insightful and engaging conversation.
The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442
In this special episode of the Retina UK Podcast, Lauren is joined by actress and BBC Lifeline spokesperson Louisa Lytton to talk about the recent BBC Lifeline Appeal in support of Retina UK.Louisa opens up about her personal connection to inherited sight loss, what inspired her to champion the appeal, and the moments during filming that stayed with her. Together, Lauren and Louisa explore why raising awareness matters, how Retina UK supports individuals and families across the country, and the life-changing impact your support can have.
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2025 (Issue 188). You can download a copy in PDF and Word format on the Retina UK website: RetinaUK.org.uk/resources.Contents in this edition are as follows:A fantastic start to our Anniversary year (Tina Garvey)Keep laughingAn incredible couple of days!Research news round upTake on a challenge and help change livesTop tech newsThank youPAID ADVERTISEMENT: Navis touchpulse - Your Guide to the WorldDouble your donation to Retina UK!You don't have to be held backPAID ADVERTISEMENT: Turn night into day – LunaGet behind us during our 50th anniversary year!Every experience counts: Insights from our Sight Loss SurveyDates for your diaryDonate to Retina UK this winter
Findings from our survey of over 600 people living with inherited sight loss.June 2025Copies of this report in plain text and PDF formats can be found on the Retina UK website: RetinaUK.org.uk/resource/retina-uk-sight-loss-survey/
In this episode we are joined by two of our fantastic fundraising team members; Joe, our Community and Events Coordinator and James, our Head of Income Generation - to give us a sneak peek at some of the exciting events and appeals we have coming up over the next year. We have lots going on as we continue to celebrate our 50th year at Retina UK, and there is something for everyone!
The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442
Retina UK is delighted to be hosting a webinar with British Blind Sport.This session will highlight how sport and physical activity can play a powerful role in boosting health, confidence and wellbeing for people living with sight loss. You'll also hear from British Blind Sport about who they are, the support they offer, and the wide range of opportunities available through their membership, events and activities.Whether you're already active or just looking to get started, this webinar will provide inspiration and practical advice on how to get involved.
Community members share their experiences:EmploymentSport and leisureMobility and travelDay-to-day living
James Clarke, Head of Income Generation, Retina UK
Christopher Patnoe, Head of EMEA Accessibility and Disability Innovation at Google
Speakers from AAVantgarde, Octant, Alkeus Pharmaceuticals, Sepul Bio and Beacon Therapeutics
Professor Jane Sowden, Professor of Developmental Biology and Genetics at University College London (UCL) Great Ormond Street Institute of Child Health
Professor Michel Michaelides, Professor of Ophthalmology, University College London and Consultant Ophthalmic Surgeon, Moorfields Eye Hospital
Kathy Evans, Chair of Trustees and Professor JohnMarshall MBE, Trustee, Retina UK
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