Retina UK: Recent Episodes
Retina UK
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.
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 www.RetinaUK.org.uk/regular-giving/ to sign up, or, if your prefer, call us on 01208 821334.
During Loneliness Awareness Week, we're hosting a special webinar to address the challenges faced by individuals with sight loss when it comes to travel and mobility. Research by RNIB has highlighted the critical need for enabling greater fulfilment and freedom through travel, with a significant impact on quality of life. According to their findings, 59% of respondents felt that exploring different parts of the country had a huge positive impact on their well-being, yet a lack of confidence often leads to loneliness and isolation.
Join us for an informative session designed to help build your confidence in traveling and overcoming barriers associated with sight loss. Our expert panel includes:
- Simon Labbett: Chair of the Rehabilitation Workers Professionals Network. Simon will share invaluable hints and tips on how to navigate your surroundings and boost your confidence in travel.
- Angie Baum: Development Intern living with retinitis pigmentosa (RP). Angie will share her inspiring story of overcoming travel fears with the help of her guide dog, Norma.
- Richard Zimbler: Co-facilitator of our ‘Talking Travel’ online group. Richard will discuss various aspects of travel, from everyday errands to adventurous trips across the country and abroad.
Don’t miss this opportunity to gain practical advice and support to help you move more freely and confidently.
Did you know May is National Walking Month? As part of Mental Health Awareness Week, we're exploring the power of movement.
As the weather turns warmer and we are happier venturing out a little more, we look at the activities that some of our communities are getting involved with. Getting out in the fresh air is good for sole, in fact 'movement' is the theme of this year's Mental Health Awareness Week.
- 5KADayInMay: hear how participants of this monthly challenge are taking on this challenge.
- Benefits of movement on mental health.
- Different types of movement – whether that's putting on your dancing shoes, riding or a maybe some gentle gardening.
- Being active in the community.
- Self-care.
Have some questions about the Big Give Kind2Mind campaign?
Listen to our Head of Fundraising Jo, as she discusses more about the Big Give. From how to donate to why this campaign is a game changer for us.
The latest e-Newsletter from Retain UK.
Please consider donating to Retina UK through a monthly or quartely direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
Join Research Development Manager, Kate Arkell as she speaks to our latest research grantees about their projects.
- PhD studentship: Dr Matteo Rizzi, UCL Institute of Ophthalmology
Investigating photopsia and photophobia in Stargardt disease. - PhD studentship: Chloe Brotherton, Edinburgh University
Understanding why different RPGR gene mutations can lead to different diagnosis. - PhD studentship: Gabriel Velichkova, UCL Institute of Ophthalmology
Investigating Stargardt disease as a target for gene repair. - Professor Jacqueline van der Spuy, UCL Institute of Ophthalmology
The consequences of toxic accumulation of a molecule called cGMP in Leber congenital amaurosis (LCA). - Professor Jane Sowden, UCL Great Ormond Street Institute of Child Health
Restoring some vision at the later stages of sight loss in advanced retinitis pigmentosa (RP) using a stem cell patch.
The latest e-Newsletter from Retina UK. If you would prefer to receive this content by email, please subscribe via our website: Join our mailing list - Retina UK
Join the fun and support a great cause.
Our Weekly Lottery has now arrived. This podcast aims to answer any questions you may have and encourage you to take part.
RetinaUK.org.uk/lottery
This webinar was broadcast live on Thursday 21 March 2024. It is available in video format on our YouTube channel: https://youtu.be/oF5DP6XUsXk
Have you ever been tempted to take part in the TCS London Marathon? In 2022 the TCS London Marathon raised £58.3 million for charity so it’s a vital source of income.Our Events and Community Fundraising Manager, James Clarke, talks to three of our 2024 runners about:- their motivation for taking part- their connection to Retina UK- the different ways in which they’ve been fundraising- what they are most looking forward to (or apprehensive about) for the big day.
Find out about our upcoming webinars on our website: RetinaUK.org.uk/webinars.
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2024 (Issue 182). You can download a copy in PDF and Word format on the Retina UK website: RetinaUK.org.uk/resources.
The short piano music at the beginning of thisrecording is a tribute to Norman Pampel FCA for his much acclaimed role as honorary treasurer of the British Retinitis Pigmentosa Society for many years during the mid 1970s. It was composed by Mark Pampel, his son.
Contents in this edition are as follows:
Track 2: So much to look forward to in 2024 (Tina Garvey)
Track 3: What’s on in 2024
Track 4: Feel the Friday Vibes
Track 5: An expert view on cataract surgery
Track 6: Cataract surgery - a personal perspective
Track 7: Join #TeamRetinaUK in 2024
Track 8: Research news round-up
Track 9: New local peer support group in Tyne & Wear
Track 10: Leading our best lives
Track 11: Spotlight on Martin Hills
Track 12: Thank you
Track 13: New pathway aims to transform eye care support
Track 14: Get to know our Fundraising team
Track 15: Support us to help more people on their sight loss journey
The latest e-Newsletter from Retina UK. If you would prefer to receive this content by email, please subscribe via our website: RetinaUK.org.uk/get-involved/mailing-list/.
Cataracts occur fairly frequently and at a relatively early age within the Retina UK community of people with inherited retinal conditions. A question that comes up over and over again is whether or not to have cataract surgery. People seem to come across conflicting advice from medical professionals, and there is understandably a lot of concern around whether the potential benefits outweigh any possible risks to remaining vision.
Kate Arkell, Research Development Manager at Retina UK, isjoined on this podcast by two experts who can discuss cataract surgery with us. Mr Kanmin Xue is an Honorary Consultant Ophthalmologist and Vitreoretinal Surgeon at Oxford Eye Hospital, and also leads the Retinal Disease & Repair Group at Oxford University. Mr Simon Keightley is a Retina UK Trustee and recently retired ophthalmic surgeon, who has performed a vast number of cataract surgeries.
This webinar was broadcast live on Thursday 25 January 2024. It is available in video format on our YouTube channel: https://youtu.be/3kTVF8SoA0w.
With more treatments coming through the development pipeline, we are all hopeful that more of those living with inherited sight loss will be offered the opportunity to take part in clinical trials in the years to come.
But what’s it like to be a participant? What do you need to consider before you commit? And how does it feel as a parent to allow your child to take part?
Join Research Development Manager Kate Arkell as she talks to a young clinical trial participant and his mum about their experiences. They will also talk about other types of research participation opportunities, and explain how treatments get from the laboratory to the clinic.
Find out about our upcoming webinars on our website: RetinaUK.org.uk/webinars.
The latest e-Newsletter from Retina UK. If you would prefer to receive this content by email, please subscribe via our website: RetinaUK.org.uk/get-involved/mailing-list/.
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 RetinaUK.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821334.
In this last episode of Blindingly Chatty, Laura Tyler is interviewed by Paula McGrath about her internship at Retina UK, her journeybefore it, and all that she’s gained from her time in the organisation.
Laura worked as a Communications Intern at Retina UK from February - November 2023.
In this month’s edition of Blindingly Chatty, Laura Tyler and Mark Pampel follow on from the subject of musical instruments and discuss composition, improvisation and performance. Mark tells us how he got into music, along with giving some tips for those who are thinking of taking music to that next level.
This webinar was broadcast live on Thursday 7 December 2023. It is available in video format on our YouTube channel: https://youtu.be/x7ZyVxmla7I
Nikolas is a bioinformatician, who uses computer power to tackle medical research challenges. He will be talking about his project to develop AI that will identify the genetic cause of an inherited retinal conditions from scans, without the need for a genetic test, and other ways that AI can help us with eye disease.Dr Nikolas Pontikos is a group leader at the UCL Institute of Ophthalmology and Moorfields Eye Hospital who is working with his team at the Pontikos Lab and the Moorfields Clinical AI Lab on creating Eye2Gene, an AI software that can help doctors to better diagnose patients with inherited retinal disease. His background is in computer science, bioinformatics and machine learning.
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2023 (Issue 181). 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:
Track 2: Reflecting back and looking forward (Tina Garvey)
Track 3: Harnessing the power of AI
Track 4: Searching for the cause of Charles Bonnet Syndrome
Track 5: Thank you
Track 6: 'Everything happens for a reason'
Track 7: Therapy development updates
Track 8: Festive fundraising
Track 9: Nurturing young scientists
Track 10: ADVERT - Sight and Sound Technology
Track 11: Double your donation with The Big Give 2023
Track 12: The difference we made in 2022
Track 13: Follow the yellow brick road for a fantastic evening
Track 14: Spotlight on Dr Katerina Tavoulari
Track 15: Spotlight on Daniel Summers
Track 16: Support us to help more people on their sight loss journey
A video version of this Webinar is available on our YouTube channel: https://youtu.be/0s1C3kXnXWc
Join us for a brief overview of the Government’s Access to Work scheme, learn how it could support you at work, and hear the experiences of a number of people with inherited sight loss who receive an Access to Work grant.We will be joined by Josh Freehan, Head of Internships at TPT. Josh has worked closely with Access to Work on their Get Set Progress Internship programme, so can provide some valuable insights. We’ll also be talking to Emily Lamb, a young person using the scheme for the first time and Simon Lakin and Bhavini Makwana, who have both used the scheme in different ways throughout their careers on a full-time and part-time basis.
The latest e-Newsletter from Retina UK. If you would prefer to receive this content by email, please subscribe via our website: https://retinauk.org.uk/get-involved/mailing-list/.
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 RetinaUK.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821334.
The Blind Poet, Dave Steele, talks candidly about his diagnosis, his poetry and his optimistic mindset.
https://www.theblindpoet.net/
This podcast covers the most important professionalswho work with the sight loss community, along with their abbreviations and what they do to improve people’s lives.
We were joined for this popular ‘Ask the expert’ session by Samantha de Silva, a consultant ophthalmic surgeon at Oxford Universities Hospital Trust.
She answered a wide variety of questions relating to inherited retinal dystrophies.
If you would prefer to watch a video of the Webinar, it is available on our YouTube Channel: https://youtu.be/f_1UEV7M8jQ
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 RetinaUK.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821334.
On this episode Laura Tyler, Yanan Yu, and Steve Golden talk about their experiences with learning and playing instruments, and how people with sight loss can play and learn no matter their level of vision.
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2023 (Issue 180). 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:
Track 2: The best days of the year (Tina Garvey)
Track 3: Articles for the Blind
Track 4: Your newsletter, your choice of formats
Track 5: Your feedback matters
Track 6: Overwhelmingly positive feedback for our Annual Conference
Track 7: ADVERT: Sight and Sound Technology
Track 8: Understanding ‘lived experience’ at our Professionals’ Conference.
Track 9: Developing and testing approaches to treatment 11
OCU400 from Ocugen
EA-2353 from Endogena Therapeutics
Transcorneal electrical stimulation from OkuVision
Condition-specific research
Track 10: Make new connections in your area
Track 11: Webinar: Ask the expert with Samantha de Silva
Track 12: “Our volunteering is in safe hands”
Track 13: Volunteer Impact Report
Track 14: Volunteers’ Week
Track 15: Thank you
Track 16: Hope for the future
Track 17: We’re here to support you every step of the way
Track 18: ADVERT: Sight and Sound Technology
Track 19: The power of collaboration: Uniting charities on social media for a greater impact
Track 20: Funding the best teams to find treatments quicker
Track 21: Build the ultimate ‘Gene Team’ of tomorrow!
In this episode Laura and Mark talk about their dreams and how they see the world in sleep. Mark is living with retinitis pigmentosa so his sight has deteriorated over his life, whereas Laura lost her sight at a very young age. They also briefly cover Charles Bonnet Syndrome (CBS).
Welcome to the 46th Retina UK Annual Conference where we come together for knowledge sharing, support, and empowerment within the inherited sight loss community. Whether you are attending online or in person this year, thank you for joining us. We have a packed programme for you today. This conference aims to foster a collaborative environment, bridging the gap between cutting-edge research and the everyday lives of those living with inherited sight loss. Throughout our conference, attendees will have the opportunity to engage in enriching discussions, have their questions answered, and learn from esteemed experts in the field. We will delve into topics such as emerging gene therapies, assistive technologies, and psychological wellbeing for individuals and families affected by inherited sight loss. Moreover, this conference goes beyond scientific exploration. It is a platform for personal stories and shared experiences, promoting a sense of community and solidarity among attendees.
Highlights include:
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Retina UK vision of treatments for all
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Research/Medical Q&A
Put your burning questions to our panel of seven leading experts in the field of inherited sight loss and treatment development. - Stronger together: Working in partnership to achieve our aim
We involve our community and other organisations in our research, information and support, and awareness-raising activities because we know we have a greater impact when we work together. Learn how you can get involved. - Tomorrow’s World: The technology of the future
Hear about new emerging technology to support with everyday living.
Welcome to the fourth Retina UK Professional Conference where we come together to support you in your work with the inherited sight loss community. Working in partnership we aim to equip you with the knowledge you need to make the biggest difference for your service users. We are pleased to offer CPD accreditation for today's Conference. It is available for all attendees.
A full video version of the Conference is available on our YouTube channel (https://www.youtube.com/retinauk).
This leaflet is available in audio, PDF and Word formats. If you would like to access the leaflet in one of the other formats, please visit RetinaUK.org.uk/resource/leaflet/
Have you ever really thought about how you use your sensations after sight loss? Does your sense of humor relate to your ability to tell a joke or hear a joke? Find the answers to these questions and more in our ‘Blindingly Chatty’ podcast from Laura and Mark.
This event is free to attend and will be CPD-accredited. Attend in-person in London and network with colleagues, or online.
Highlights include:
- Experience of diagnosis/points of impact for those living with inherited sight loss: Dr Jasleen Jolly, Anglia Ruskin University
- Sight loss pathway: A collaborative approach: Robert Cooper, Strategic Engagement Lead NHS, RNIB
- Learning from lived experience: the wider family’s perspective: People living with inherited sight loss, their parents and partners share experiences from their sight loss journeys
- Difficult conversations and breaking bad news: Prof Susan Downes, Oxford University Hospitals and Dr Amanda J Salisbury.
- Research update: An overview of the latest progress in development of therapies for inherited sight loss: Kate Arkell, Research Development Manager, Retina UK.
- Retina UK Professionals’ Project: How we can support you and families affected by inherited sight loss.
Find out more and book your place to join in London, or online, at RetinaUK.org.uk/prof-conf
Book now to attend the Retina UK annual conference in London, or online, on Saturday, 24 June. The event is free to attend and highlights will include:
- Retina UK vision of treatments for all
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Gene therapy – Augmentation, editing, and silencing: Prof Tara Moore, Ulster University.
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The potential of stem cell treatments: Prof Lyle Armstrong, Newcastle University.
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Practical example of gene therapy: Mr Kanmin Xue, University of Oxford, Oxford Eye Hospital.
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Practical example of the role of synthetic implants: Prof Paulo Stanga, The Retina Clinic, London.
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Research/Medical Q&A
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Put your burning questions to our panel of seven leading experts in the field of inherited sight loss and treatment development.
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Stronger together: Working in partnership to achieve our aim
-
We involve our community and other organisations in our research, information and support, and awareness-raising activities because we know we have a greater impact when we work together. Learn how you can get involved.
- Tomorrow’s World: The technology of the future Hear about new emerging technology to support with everyday living.
To register phone 01280 821334 or visit RetinaUK.org.uk/annual-conference.
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 RetinaUK.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821334.
This is a recording of a video held on Thursday 18 May. The full video recording can be found on our YouTube channel: https://youtu.be/3m1wWmQ8bIEhttps://youtu.be/3m1wWmQ8bIE
We are excited to be joined by Hair Stylist Anna Cofone to explore all things hair and scalp care.Anna is a session hairstylist with 20 years experience working in the fashion and music industry. Anna worked for 6 years on Lana Del Rey Campaigns. After that she has been working for other talents like Dua Lipa, Claudia Schiffer, Cindy Crawford, Lara Stone and with brands including Valentino, Balmain, Preen, Louis Vuitton, Erdem, Burberry and Cartier. In 2019 Anna founded Hair & Care with the aim of providing tools to the sight loss community to develop self-care skills.Anna will talk about guidance on and learning how to determine the texture and type of hair and what type of products to use accordingly. How to wash your hair and what routine you should follow with your hair care products such as shampoo and conditioner. Discover the impact that hair care can have on a person’s self-esteem. Ending the session with time for Q&A
Our volunteers are highly valued members of the Retina UK team and their roles are essential to help support and enable people affected by inherited sight loss to live fulfilling lives.
Download the Volunteer Impact Report in PDF format
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
This webinar was first shown on Thursday 13 April 2023. A recording including the video content is available on our YouTube channel: https://youtu.be/9_DeX0Q3wYE.
Explore the value of volunteering with the Retina UK team, listen as they share their thoughts on volunteering and the benefits it’s brought them. From raising their self esteem and confidence, to securing employmentOur speakers will tell us about the many positive impacts volunteering has had for them.You’ll have the opportunity to ask questions and the Retina UK team will also be on hand to let you know more about the ways you can get involved with Retina UK.
The BBC World Service has undertaken an investigation of unproven treatments for retinitis pigmentosa (RP) and has produced a documentary film, called Blind Faith, which is available on BBC iPlayer: https://www.bbc.co.uk/iplayer/episode/p0f8vnvm/blind-faithThis documentary highlights a really significant and concerning issue that impacts families living with rare diseases, including inherited sight loss, and Retina UK applauds the BBC for carrying out this revealing investigation. We believe the programme has the power to prevent others’ risking being harmed by unproven treatments.
In this podcast, we talk to the reporter, Ramadan Younes and to Professor Robert Maclaren. Ramadan is living with retinitis pigmentosa and made the documentary to highlight these unproven treatments being offered around the world.
Information and support for those living with inherited retinal conditions is available from our Helpline, on 0300 111 4000 or at Helpline@RetinaUK.org.uk
This webinar was first shown on Thursday 23 March 2023. A recording including the video content is available on our YouTube channel: https://youtu.be/0rjqHsz7EU4.
Join us and the Low Vision Team from Focus Birmingham talk about how you can access your local low vision service, the benefits of a low vision assessment and see some of the equipment that can be provided to you.
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2023 (Issue 17o). You can download a copy in PDF and Word format on the Retina UK website: RetinaUK.org.uk/publications.
Kate Arkell, Research Development Manager at Retina UK hosts this edition alongside Dr Madina Kara, Director of Research and Innovation at Fight for Sight. They are joined by Prof Graeme Black and Prof Alison Hardcastle. Graeme is Professor of Genetics and Ophthalmology at Manchester Uni, and a consultant ophthalmologist at Manchester Royal Eye Hospital. He is the original lead investigator of the UKIRDC. Alison is Professor of Molecular Genetics and Deputy Director of Research within the Institute of Ophthalmology, University College London. Alison is current lead investigator of the UKIRDC
They discuss the UK Inherited Retinal Dystrophy Consortium, or UKIRDC, which has sometimes been referred to as the RP Genome Project. This is a major research project, which started in 2014, and has been funded by Retina UK with support from Fight For Sight. With a significant proportion of inherited retinal conditions being caused by unidentified genetic faults, and many families unable to get clear results from genetic tests in clinic, the project set out to solve previously undiagnosable cases and discover more of the genes and mutations that are associated with sight loss.
This webinar was originally broadcast on 23 February 2023. It is also available in video format on our YouTube channel: https://youtu.be/lcMpSSdxWuU.
Following the success of our last round of ‘Ask the Expert’ Webinars, we will be holding three more throughout 2023.
Our first Expert is Simon Keightley, a consultant ophthalmic surgeon and Director of Examinations for the International Council of Opthalmology. With more than 35 years in the field, Simon is ready and waiting for your questions.
The session will be solely questions and answers, you can ask you questions during the webinar, when registering (see below) or by emailing them to services@retinauk.org.uk.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
Webinar: Supporting Retina UK And What it Can Do For You Originally broadcast on 26th January 2023.
“It’s given me the boost in life I wanted and made me think I’m able to go on and achieve so much more.”
Retina UK supporters Chris and Caryn, as well as our very own Information and Support Coordinator Mark Baxter share their thoughts on fundraising and the physical and emotional benefits it’s brought them. From completing marathons to jumping out of planes, displaying collection tins to giving awareness-raising speeches, they’ve taken on fundraising big and small.
Our speakers tell us about the many positive impacts fundraising has had for them, including for their emotional well-being, and the many surprises along the way.
A chat with our founder, Lynda Cantor MBE and our (former) Head of Fundraising, Deborah Laing.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
This content was recorded during a Retina UK webinar on Thursday 8 December 2022. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/U8T9cAJIsqU.
This webinar aims to equip you with knowledge of social security eligibility, highlighting the key benefits for people living with sight loss, top tips when completing your applications and details of what you can do if you do not receive the correct benefit award. There will be an opportunity to ask questions at the end of the session.
Our speaker is Dominic Milne, Legal Rights Officer at RNIB.
This content was recorded during a Retina UK Information Event on Tuesday 6 December 2022. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/gER4y7e9T14.
We welcome you to join us for our virtual information event for the Oxfordshire area.
This is a great opportunity to:
- hear from our speakers about the latest in medical research for IRDs, potential treatment options and clinical trials,
- see the latest assistive technology solutions and find out what the technology of the future may look like
- hear more about the services offered by local site loss organisations and Retina UK.
Whilst the event is in part tailored to the Oxfordshire area, a lot of information will be of interest to anybody with an interest in learning more about IRDs. Our Keynote speaker will be Mr Kanmin Xue. Mr Xue is a Consultant Vitreo-retinal Surgeon at the John Radcliffe Hospital and Wellcome Trust clinician scientist fellow at the University of Oxford where he leads the Retinal Disease and Repair Group. We will also be joined by Sight and Sound Technologies (who are kindly sponsoring the event).
Mr Xue completed undergraduate medical training at Brasenose College Oxford (with the top first-class – Martin Wronker Prize in Medicine) and clinical training at Trinity College Cambridge as part of an MB-PhD programme. Following a residency in London and completion of ophthalmology specialist training in Oxford/Thames Valley Deanery, he undertook the prestigious Vitreo-retinal Fellowship at the Royal Victorian Eye & Ear Hospital in Melbourne, Australia. He was the NIHR Academic Clinical Lecturer in Oxford, leading research and clinical trials of retinal gene therapy and robotic eye surgery. Clinically, he looks after patients with general ophthalmic conditions, cataracts, and offers sub-specialist expertise in retinal diseases. He supervises and trains surgeons in cataract surgery (including dealing with complications) and the full spectrum of vitreo-retinal surgery. Mr Xue is the recipient of numerous awards, including the Ruskell Medal (Worshipful Company of Spectacle Makers), Ian Fraser Cup, Luigi Barca Award, and Martin Wronker Prize in Medicine.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
Last year, with your help, we raised an incredible £53,752, which made great strides in helping our medical research recover from the pandemic. But we can’t stop now. So, we have put a renewed focus on our research, and have developed a new strategy that will look at treatments for all.
The Big Give Christmas Challenge couldn’t have come at a better time to help us push on with our new research strategy. We have big ambitions, and we need to have a big target in order to see it realised. This year, with your help, we will be aiming to raise £50,000.
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2022 (Issue 178). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.
This content was recorded during a Retina UK webinar on Wednesday 9 November 2022. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/K5Dr9O7FFb4.
With Christmas parties upon us, come and join Bhavini as she shares her top tips for selecting the right make up, The best way to apply and blend, how to shop for makeup and picking the right colours.
Bhavini has been involved with Retina UK for many years as a service user and a volunteer. She has found the support provided to her in the past invaluable, and is an Ambassador for the charity.
Bhavini dedicates her time to empowering others with inherited sight loss to grow their confidence and live independent lives. She has volunteered on the Retina UK helpline for the past eight years and facilitates the London local peer support group. We also work with her in a professional capacity with BAME Vision, of which she is Chair.
The mum of two was diagnosed with the inherited retinal condition retinitis pigmentosa aged 17.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
This content was recorded during a Retina UK webinar on Thursday 29 September 2022. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/YOyf3iLHK9Y.
Retina UK recently launched an innovative course, Discover Wellbeing, to help those living with inherited sight loss develop an awareness of emotional wellbeing and practical skills to adapt to life’s ups and downs.
The course has been shaped by the lived experiences of people affected by inherited sight loss conditions. Hear from those involved in the creation of the course and find out more about the five stages of the sight loss journey. There will also be an opportunity to ask questions.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
Hear from our Chief Executive, Tina Garvey and our Head of Fundraising, Deborah Laing, as they talk about our planned fundraising activity to the end of 2022.
Useful links:
- Helpline - available Monday to Friday 9.30am - 9.30pm
0300 111 4000 | helpline@RetinaUK.org.uk * The Raffle * The Big Give Christmas Challenge * Discover Wellbeing
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
A big thank you to the Team from Euroglaze, Barnsley, for sharing how they benefitted from choosing Retina UK, as their Charity of the Year Partner.
Thank you to all those who completed our recent Sight Loss Survey – almost 700 of you took the time to share your experiences.
We carried out our first Sight Loss Survey in 2019 and used what we learned to improve our support. This included the launch of our Unlock Genetics and Discover Wellbeing resources. We also shared information with the decision-makers who agreed to fund Luxturna, the first treatment for inherited sight loss, on the NHS. This helped them to understand the day-to-day impacts of inherited sight loss.
This spring we repeated the Survey, to learn what has changed since 2019 and shape our future plans. Here are some of the key findings.
Retina UK Impact Report illustrating the difference we made in 2021.
A PDF copy of the report can be downloaded from the Retina UK website at: RetinaUK.org.uk/publications.
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2022 (Issue 177). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.
The programme for our Annual Conference is available to download (or listen to) from RetinaUK.org.uk/annual-conference.
This is a recording from the Retina UK Professionals' Conference 2022 which took place online and at the Macdonald Burlington Hotel in Birmingham.
Visit the Retina UK website for a copy of the programme.
This content was recorded during a Retina UK webinar on Tuesday 12 July 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK.
Retina UK are collaborating with Usher Kids UK and CureUsher to deliver a two part webinar mini series about Usher syndrome.
Our next webinar will be on Tuesday 12 July where we will be joined by Professor Mariya Moosajee looking at the latest research, clinical trials and treatment prospects for people affected by Usher’s syndrome.
The Professionals' Conference takes place on Friday 8 July 2022 at the Macdonald Burlington Hotel on New Street in Birmingham and online via Zoom: https://retinauk.org.uk/information-support/retina-uk-events/professionals-conference/.
The programme includes:
- Welcome
- Sponsors
- Delegate information
- Programme
- Exhibitors
- Speakers and presenters
The Annual Conference takes place on Saturday 9 July 2022 at the Macdonald Burlington Hotel on New Street in Birmingham and online via Zoom: https://retinauk.org.uk/information-support/retina-uk-events/annual-conference/.
The programme includes:
- Welcome
- Delegate information
- Programme
- Sponsors
- AGM Agenda
- Speakers and presenters
- Advert - Sight and Sound Technology
- Exhibitors
- Advert - Talking Print
- Advert - Ramble Tag
- Quote
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
This content was recorded during a Retina UK webinar on Thursday 26 May 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK.
We are pleased to welcome VisionAid who will be joining us for our upcoming webinar on Technology solutions.
VisionAid is a family owned and run business who have been providing solutions to visually impaired people since 1996 and are now one of the largest specialist low vision and blindness product suppliers in the UK.
We will be looking at four main areas of technology during the presentation:
- Optical magnifying glasses vs electronic video magnifiers
The pros and cons of traditional optical magnifiers, mobile phones solutions and electronic video magnifiers. 2. Latest Wearable Technology
A round-up of the latest wearable video magnifiers which enable handsfree magnification for watching TV, seeing people’s faces, sporting events, cinema, practical tasks (cooking, playing an instrument, gardening etc.) including a remote demonstration of a unit. 3. Transportable video magnificationLightweight video magnifiers providing desktop performance in packages that can easily be moved from one location to another 4. Text-to-speech solutions
From the latest handheld and wearable OrCam solutions to feature rich, high performing desktop and computer connectible options (some combined with magnification).
This content was recorded during a Retina UK webinar on Tuesday 24 May 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK.
Retina UK are collaborating with Usher Kids UK and CureUsher to deliver a two part webinar mini series about Usher syndrome.
The first instalment will see us joined by a panel of sector experts, including Mr Rob Henderson (Moorfields Eye and Great Ormond Street Hospitals), Chloe Joyner (UsherKids UK), Kate Arkell (Retina UK) and Joanne Milne (CureUsher). We will be covering key questions and topic areas including what Usher syndrome is, how to get a diagnosis, both clinical and genetic, and what will happen after this, the importance of regular testing, how to interpret the genetic data and who can help you understand this and how you can connect with other support services.
The second instalment of the webinar series will be held on Wednesday 22 June at 7.00pm – more details to follow.
This content was recorded during a Retina UK webinar on Thursday 28 April 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK.
This webinar will be presented by Avril Watson. Avril is a PhD candidate of Stem Cell Biology in Professor Majlinda Lako’s group at Newcastle University and also a Scientist at Newcells Biotech Ltd. She is funded through the Marie Curie Actions project StarT which focuses on diagnosis, treatment and modelling of Stargardt disease. Her research is focused on modelling Stargardt disease with mini-retinas generated from patients with late-onset Stargardt disease. Avril has always had an interest in retinal disease and has worked in various retinal research groups in Ireland before moving to the UK to continue her studies. Aside from her interest in retinal research, Avril plays guitar, loves to swim and is a big fan of dogs!
Inherited retinal disorders affect nearly one in 2,000 people in the world. Despite such a high frequency, there are limited treatment options available. There are a number of factors responsible for this. One of the main issues is the difference in early symptoms and also in the progression of disease over time, even in cases where individuals have the same genetic diagnosis. Considering this, each case of retinal blindness turns out to be quite rare, and so it can be difficult to make personalised medicine for each and every person. The trick is to identify common symptoms between different retinal diseases, so that the therapy can be used to help as many people as possible. However, this is easier said than done!
With the help of mini-retinas, we can study these diseases in a patient-specific manner and on a much more in-depth scale. Mini-retinas are essentially mini eyeballs in a dish. They contain all of the cell types in the human retina and we can perform many experiments on these to figure out the missing pieces in the puzzle. This allows us to identify new patterns in retinal disease that drugs can later be developed for. As mini-retinas are very similar to the real thing in human, we can also use them to test out these new treatments to ensure that they do what they’re supposed to. This testing strategy allows therapies to proceed through all the regulatory processes quicker and with more confidence so that they can be one step closer to being used in the clinic to prevent/treat vision loss.
In this webinar, Avril will discuss some of the existing therapies available for retinal disease, and some that are being developed for a number of different retinal conditions, highlighting how mini-retina are important in the drug development process.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
Would you like to help shape Retina UK’s future? Do you want to ensure decision-makers understand the impact of inherited sight loss? If so we’d love to hear from you.
By sharing your views and experiences in our 2022 Sight Loss Survey you can help ensure our current and future activities are relevant and that they respond to your needs.
We will also share the findings with other statutory bodies and organisations that can make a difference for people living with inherited sight loss.
Take part
The survey is open to anyone living in the UK with an inherited sight loss condition. It can take 20 minutes or longer to complete, especially if you are using accessibility software or devices. It is not possible to stop part-way and resume another time, so only start the survey now if you have time to complete it in one session. Otherwise, feel free to exit and come back when you have more time. The deadline is Tuesday 26 April.
It can be completed:
- on paper
- online (surveymonkey.co.uk/r/SightLossSurvey2022)
- over the phone. Call 01280 821334 and we will arrange a time to phone you back.
You can respond anonymously should you wish.
This content was recorded during a Retina UK webinar on Thursday 31 March 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK.
Dr Daniel Jackson will talk about medical imaging of the retina. Detailed imaging of the eye is crucial for the assessment of many eye conditions and retinal disorders in particular. He will be discussing what images you are likely to have during a hospital appointment; how they are taken; why we take them; how we interpret them; and how this helps in the management and treatment of retinal conditions. He will talk through pictures and examples to help illustrate exactly what we are looking at and what it means.
Daniel is a Clinical Research Fellow working at Moorfields Eye Hospital and the Institute of Ophthalmology in London. He is currently undertaking a PhD with Professor Mariya Moosajee and works in the adult and children genetics clinics at Moorfields. His background is in Clinical Ophthalmology where he has almost completed his training in the Oxford training programme. He has a special interest in genetic eye disorders, including inherited retinal conditions, paediatrics and glaucoma.
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2022 (Issue 176). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.
This content was recorded during a Retina UK webinar on Thursday 24 February 2022. You can watch the full version, which includes slides, on our YouTube channel: https://www.youtube.com/c/RetinaUK.
This webinar will be presented by Alex Pitts, National Partnerships Manager & Lead Safeguarding Officer at British Blind Sport. She will talk about:
- the benefits of sport and physical activity
- the key objectives of British Blind Sport
- the BBS Have a Go Days and Active at Home Programme
- where you can find your local sports and physical activity opportunities
Alex is responsible for the development of key partnerships with stakeholders from across the VI sector and sport sector to achieve greater connectivity and widened opportunities for participation of sport for people living with sight loss.
Alex has worked with BBS since 2018, previously as BBS’ Participation Officer, and has gained extensive experience within the charity and its sports development objectives.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
This content was recorded during a Retina UK webinar on Thursday 27 January 2022. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/Lz0frr1KydQ
Professor Ffytche will provide an explanation of what Charles Bonnet Syndrome is, the science behind it, and share some potential coping strategies for people who experience visual hallucinations.
Professor Ffytche joined the Department of Old Age Psychiatry at Kings College London in 2006. He is Professor of Visual Psychiatry and Lead Consultant Psychiatrist to the Visual Perceptual Disorder clinic at the South London and Maudsley NHS Foundation Trust, a national specialist service for patients with visual hallucinations. He researches brain mechanisms of vision and how they go wrong to cause visual hallucinations, visual illusions and related symptoms and treatments for such experiences. He has published over 100 articles in the scientific and lay literature with over 4,000 academic citations. He plays a leading role in patient and public education for Charles Bonnet syndrome (visual hallucinations in eye disease) as medical advisor to Esme’s Umbrella and has helped develop information resources on visual hallucinations for the NHS, charity sector and eye-health professionals.
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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.
This content was recorded during a Retina UK webinar on Thursday 9 December 2021. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/pLDzECeFrJc
Dr Rehman has been involved in running recent clinical trials for inherited sight loss treatments and will give us a general overview of the clinical trials process and practicalities, including issues to consider if you are given the opportunity to take part. There will also be an opportunity to ask questions.
Before moving to Oxford to further her experience in research and ophthalmology, Salwah worked as a junior doctor in Greater Manchester at The Royal Bolton Hospital. She is currently working on the ongoing gene therapy trials for choroideremia and RPGR X-linked retinitis pigmentosa under the supervision of Professor Robert MacLaren.
Salwah completed her medical studies from the University of Liverpool. There, her interest in research started early and she also received her Master of Research in Clinical Sciences (MRes) degree with distinction. During her master’s degree she undertook a research project with Professor Colin Willoughby at St Paul’s Eye Unit in The Royal Liverpool University Hospital, evaluating corneal biomechanics and biomechanically corrected intraocular pressure, which has won the North of England Ophthalmology Society summer meeting Best Poster award in 2018. Her work exploring transportation efficacy and clinical outcomes of preloaded keratoplasty grafts for corneal transplantation also won a Best Poster award at the Liverpool National Student Research conference and was published in Cornea in 2019.
Donate now and your gift will be doubled! The Big Give Christmas Challenge is underway. Make your donation to medical research as soon as possible and it will be DOUBLED at no additional cost to you: https://donate.thebiggive.org.uk/campaign/a056900001txvAyAAI
Now is such an exciting time for sight loss research - but we can't take our foot off the pedal now, and the pioneering projects we fund are only made possible by your donations.
Need help to make your donation, or would like more information? Contact Deborah on 07841 004564 or email fundraising@RetinaUK.org.uk.
Spread the word amongst friends and family to help us raise as much money as possible – we’re aiming for £50,000 this year!
Thank you for your support - together we can drive progress towards new and effective treatments for inherited sight loss.
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2021 (Issue 175). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.
This content was recorded during a Retina UK webinar on Wednesday 27 October 2021. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/1DYvRgjwd8A
Michael Gilhooley is a clinical lecturer in the department of Genetics, Institute of Ophthalmology University College London and Moorfields Eye Hospital. His research interests include the development of novel therapies for inherited retinal degenerations (optogenetics) and inherited optic neuropathies.
This session introduced the technique of optogenetics and its potential for development into a treatment for IRDs. Optogenetics is the process of expressing light sensitive proteins in cells, such as these surviving cells in the retina, to allow them to react to light independently. It has recently been used for the first time to return some vision to a patient with IRD in Paris as reported in the BBC News.
A PDF copy of this recording is available at:https://retinauk.org.uk/information-support/publications/.
Speakers include:
- Professor Marcela Votruba, Professor and Hon. Consultant in Ophthalmology
- Dr Nicola Tavener, Genetic Counsellor
- Dr Paul Cornes
- Glenn Tookey, CEO, Sight and Sound
Presentations will cover:
- Genetic primer- patterns of inheritance and genetic counselling- especially relevant to inherited retinal dystrophies (IRD)
- Summary of IRD diseases, genes & overview of current IRD gene therapy and treatment trials
- Clinical Outcomes Group- How are we going to find new treatments for rare diseases such as IRD?
- Accessible Technology from Sight and Sound
The focus of our Wales information evening is specific to that part of the United Kingdom. Please remember that the process for referrals etc. may not be exactly the same in your home region.
This online information evening was recorded on Wednesday 29 September 2021. The speakers do reference slides. They are available on the YouTube recording of this webinar if required: https://youtu.be/7KptxsuXdUU.
Speakers include:
- Miss Julie Silvestri, Clinical Director for Ophthalmic Services at the Belfast Health & Social Care Trust
- Miss Eibhlin McLoone, Paediatric Ophthalmologist
- Dr Alex Yeong SpR Ophthalmology
- Dr Shane McKee, Consultant in Genetic Medicine
- Miss Claire Kirk, Genetic Counsellor, Ophthalmic Services at the Belfast Health & Social Care Trust
- Miss Laura Cushley, PhD Student, QUB
Presentations covered:
- Updates on genotyping in inherited retinal disorders in both the adult and paediatric populations
- Inheritance patterns
- Unlock Genetics
- Navigating towns and cities with sight loss
This webinar features Elena Piotter and was recorded on Tuesday 24 August 2021. Elena does reference slides in her presentation. They are available on the YouTube recording of this webinar if required: https://youtu.be/lQ6SEK-wLZs..
Elena Piotter, a PhD student working in Robert MacLaren's group in the Nuffield Laboratory of Ophthalmology at the University of Oxford, is currently researching DNA and RNA base editing tools aiming to correct pathogenic mutations in ABCA4. Her focuses on gene therapy, CRISPR technology including DNA and RNA base editing, and why this is relevant for Stargardt disease. She is excited to have this research funded by Retina UK and recently ran an UltraChallenge 25km to raise money and show support for Retina UK.
There are a number of webinars and online information evenings being held by Retina UK in the autumn of 2021. For more information, visit: https://retinauk.org.uk/info-events.
This webinar features Roly Megaw and was recorded on Thursday 23 September 2021. Roly does reference slides in his presentation but the content is easy to follow without the slides.
Roly Megaw is a clinician scientist. He is a Wellcome Trust funded clinical lecturer at the MRC Human Genetics Unit at the University of Edinburgh and a consultant ophthalmologist in NHS Lothian. Roly undertook his PhD with Charles ffrench-Constant at the Scottish Centre for Regenerative medicine, using induced pluripotent stem cells to model x-linked retinitis pigmentosa, prior to undertaking his clinical fellowship with Graeme Black in Manchester.
The webinar is also available on the Retina UK YouTube channel where it includes the slides: https://youtu.be/msbH6QseSBk.
There are a number of webinars and online information evenings being held by Retina UK in the autumn of 2021. For more information, visit: https://retinauk.org.uk/info-events.
A PDF copy of this recording is available at:https://retinauk.org.uk/information-support/publications/.
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
Gold medal winning paralympian and Retina UK Ambassador Steve Bate MBE talks to Head of Fundraising, Deborah Laing in the run up to the 2020 Paralympics in Tokyo.
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2021 (Issue 174). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.
This content has been taken from the Unlock Genetics website: www.RetinaUK.org.uk/genetics.
High quality information on genetic testing and counselling for families affected by inherited sight loss is now available in one place thanks to the launch of an innovative new website, Unlock Genetics (www.RetinaUK.org.uk/genetics). The site aims to increase the level of awareness of genetic testing and genetic counselling amongst people living with inherited sight loss conditions, empowering them to make fully informed decisions about their lives, healthcare and family planning. It provides clear, trustworthy and balanced information and has been developed with significant input from experts in the field and also those who live with inherited sight loss.
A PDF copy of this recording is available at:https://retinauk.org.uk/information-support/publications/.
Retina UK Research Development Manager gives a broad update on what's happening in the research world. This talk was originally made in the latter part of 2020 to the Retina UK Local Peer Support Groups.
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
The different tracks within this episode feature Retina UK Research Development Manager Kate Arkell in conversation with Georgina Hall, Consultant Genetic Counsellor at the Manchester Centre for Genomic Studies about why you might consider getting a genetic test. It is followed by Retina UK Information and Support Manager Denise, who speaks to Georgina about the practicalities of getting a genetic test. Finally Bhavini and Martin share their very different experiences of genetic testing and counselling.
Find out more by visiting our website: www.RetinaUK.org.uk/genetics.
The Conference took place on Friday 16 April 2021. It was held online due to restrictions currently in place. The programme is available to download as follows:
- PDF format: https://retinauk.org.uk/wp-content/uploads/2021/04/Professionals-Conf-2021-FINAL-2.pdf
- Word format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-Professionals-Conference2021.docx
The Conference took place on Saturday 17 April 2021. It was held online due to restrictions currently in place. The programme is available to download as follows:
- Programme in PDF format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-annual-conf-prog_2021-FINAL-2.pdf
- Programme in Word format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-Annual-Conference2021.docx
The programme is also available in audio format on this channel.
Annual Conference - 17 April 2021, starting at 9.30am with the AGM, followed by the Conference at 10.00am.
More information is available on the Retina UK website at www.RetinaUK.org.uk/annual-conference.
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2021 (Issue 173)
A written article based on this recorded interview is available in the Spring 2021 edition of our Newsletter, Look Forward: https://retinauk.org.uk/information-support/publications/
A PDF copy is available here: https://retinauk.org.uk/information-support/publications/
- Latest Retina UK Podcast features Luxturna treatment
- Retina UK Annual Conference
- The Big Give Christmas Challenge
- Charles Bonnet Syndrome Patient Information Event
- Local groups
- Christmas Raffle
- Tech tip
- Sight Village news
- 10 for 10 Virtual Challenge
Retina UK Research Development Manager Kate Arkell speaks to three of the first people to receive the Luxturna (voretigene neparvovec) treatment in the UK. Jake, Lee and Matt all received the Luxturna gene therapy at the start of 2020. They all have two faulty copies of the RPE65 gene and are living with Leber congenital amaurosis type 2 (LCA2) and severe early-onset RP.
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2020 (Issue 172)
This edition includes details about:
- The Retina UK Christmas raffle
- Usher Kids UK family Zoom calls
- Charles Bonnet syndrome patient information event
- The difference we made in 2019
- Virgin Money London Marathon 2021
- Volunteers needed to test new memory stick project
Retina UK Research Manager, Kate Arkell, speaks to Professor Andrew Webster, Professor of Molecular Ophthalmology at University College London and Consultant Ophthalmologist at Moorfields Eye Hospital; Dr Nikolas Pontikos, Computational Scientist,currently a Eye Moorfields Charity career development Fellowat University College London and Nick Nettleton, Founder and CEO at Loft Digital.
The MyEyeSite application aims to give people with living with rare eye conditions ownership of their own digital medical data.
https://myeyesite.health/
This E-Newsletter includes information about:
- Our BBC Lifeline appeal
- Virtual local group meetings
- Research funding
- Royal Parks half marathon
- Volunteers needed to test new app
- Christmas raffle
- Audio material
- Feedback
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2020 (Issue 171)
This is a voice recording of an article posted on the Retina UK website: https://retinauk.org.uk/general-news/retina-uk-covid-19-response/
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2020 (Issue 170)
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2019 (Issue 169)
Listen to the audio recordings from the Retina UK Annual Conference on 28 September 2019 in Milton Keynes.
Listen to the audio recordings from the Retina UK Professionals' Conference on Friday 27 September 2019 in Milton Keynes
The latest newsletter from Retina UK containing updates from all areas of the charity; the latest research news; our Annual Conference and other events; the information and support we provide and the difference this makes. None of this would be possible without your support and we also celebrate the many ways you get involved.
National sight loss charity Retina UK has published its unique insight into the experiences of those living inherited retinal conditions.
Almost 1,000 people completed a survey earlier this year to help the charity understand the real-life experiences, challenges and expectations of those living with these conditions.
Tina Houlihan, Chief Executive, said: “We are an organisation entirely focussed on people living with inherited retinal dystrophies; to make the biggest difference for our community and have the right priorities we need to constantly learn more about real-life experiences, challenges and expectations of families living with these conditions.”
Our printed Newsletter, Look Forward, is produced three times per year. It is available in print, on audio, in digital format and also in Braille. For more information and to subscribe to Look Forward, please visit: https://retinauk.org.uk/
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2018 (Issue 166)
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2018 (Issue 165)
Below are recordings from the RP Fighting Blindness (now Retina UK) Annual Conference held on 23 June 2018.
- Welcome & Intro
- Dr Stephen Hicks presentation
- Victoria Claire presentation
- Dr Laura Brady presentation
- Voice Control presentation
- Dr Mariya Moosajee presentation
- Prof Susie Downes presentation & Prof John Marshall Award
- OxSight Workshop
- RP Question time & Conference Close
- Annual General Meeting
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2018 (Issue 164)
Below are recordings and copies of the presentations from the RP Fighting Blindness (now Retina UK) London Information Day held on 07 December 2017.
- London Information Day – Part 1
- London Information Day – Part 2
- London Information Day – Part 3
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2017 (Issue 163)
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2017 (Issue 162)
24 June 2017
- Exhibition, stands and registration open
- Convene and Conference Welcome (5 mins)
Chairman, Don Grocott * Presentation one: Small Molecule Therapies (30 mins)
Professor Mike Cheetham * Presentation two: Changing the Final Destination – correcting the mistakes in our genetic make up to prevent disease progression (20 mins)
Professor Tara Moore * Tea and coffee break (40 mins) with a chance to view the stands and chat * Please reconvene promptly for the second session * Genetic Testing in RP – an update (30 minutes)
Professor Susie Downes * The John Marshall Award – RP Scientist of the Year presentation (15 mins)
Presented by Professor John Marshall MBE, RPFB
Trustee * Chief Executive’s Conference Address (15 minutes)
Tina Houlihan, Chief Executive, RP Fighting Blindness * Lunch (55 mins) - Lunch is provided and the stands will remain open
Please reconvene promptly for the afternoon session * Inspirational speaker: Steve Bate MBE (30 mins) * Workshop Sessions (60 mins)
Genetic Management (Held in main room)
Retinal Implants (Held in room two)
Benefits (Held in room three)
RNIB Connect (Held in room four)
Employment (Held in room five) * Tea and Coffee Break (30 mins) with a chance to view the stands and chat
Please reconvene promptly for the final session * RP Question Time (60 mins)
Chaired by Professor John Marshall MBE and joined by this morning’s medical speakers * Chairman’s Conference Address (10 mins)
Don Grocott, Chairman of the Board * Annual General Meeting (35 mins)
The formal business matters of the charity
Non-members are welcome to attend but are unable to speak or vote on any resolution
Below are recordings and copies of the presentations from the RP Fighting Blindness (now Retina UK) Families Conference, held 5th to the 7th of May 2017.
- Welcome & Introduction
- Inherited Retinal Dystrophies and Syndromes – Prof Andrew Webster
- What can an alliance of patients and professionals achieve – Prof Graeme Black
- Medical Q & A
- The current clinic experience for families – Rob Henderson
- The Genetic Eye Clinic experience – Theo Gale
- Life beyond diagnosis – Laura Ross
- How families cope and provide the right support for their children – Bo Anderson
- Q & A
- Translating Science into Medicine – Dr Mariya Moosajee
- Science Q & A
- A Family Story – Chloe Joyner & Bhavini Makwana
- Pathway to support for education – Wendy Sainsbury
- The Appreciative Enquiry Session (part 1)
- The Appreciative Enquiry Session (part 2)
- The Appreciative Enquiry Session (part 3)
- The Appreciative Enquiry Session (part 4)
- The Appreciative Enquiry Session (part 5)
- The Appreciative Enquiry Session (part 6)
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2017 (Issue 161)
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2016 (Issue 160)
Below are recordings and copies of the presentations from the RP Fighting Blindness Aberdeen Patient Information Day held on 15 September 2016.
- Aberdeen Patient Information Day – Part 1
- Aberdeen Patient Information Day – Part 2
- Aberdeen Patient Information Day – Part 3
- Aberdeen Patient Information Day – Part 4
- Aberdeen Patient Information Day – Part 5
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2016 (Issue 159)
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2016 (Issue 158)
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2015 (Issue 157)
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2015 (Issue 155)
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2015 (Issue 154)
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2014 (Issue 153)
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2014 (Issue 151)
The print edition of this newsletter is available on Issu: https://issuu.com/home/published/150spring2014
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2013 (Issue 149)
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2013 (Issue 148)
Contents include:
- RP Awards
- Letter from the Chief Executive
- Gene therapy update
- Olympic values award for Toby
- Rhodopsin RP Project: the sequel
- Retinal implant approved by FDA
- Retinal implant AG study results
- More than just positive spin
- The RP tandem challenge
- Round the island walk
- Carrots night walk 2013
- New York marathon
- The RP Conference 2013
- Conveting the constitution
- Meet the researcher
- Changing faces at RP Fighting Blindness
- 'Team Finlay' running for RP research
- The RP Fighting Blindness short story competition 2013
Contents include:
- The Gene Team appeal
- Letter from the Chief Executive
- Second Sight milestone for people with RP
- New source for stem cells may help save sight
- Lottery funded project ends
- Neurotech announce results of clinical study
- Carole Holmes
- Run for RP Fighting Blindness!
- Marathon girl
- Easy fundraising
- Ways of seeing
- Stars of our community
- The power of dance
- Outreach update
- RAG weekend 2013
- Isle of Wight walk to save sight
- RPFB membership
Contents include:
- Retina International World Congress
- Letter from the Chief Executive
- The RP Conference 2012
- Charity of the Year
- Running events
- Stars of our community
- Outreach update
- Olympic torchbearers shine a light
- Jeans of Genes
Contents include:
- £1/4m boost for RPFB
- Letter from the Chief Executive
- Trustees approve research grants
- ACT report stem cells as 'safe'
- Inherited blindness: new genetic testing
- Treatment: the dangers of misinformation
- Carrots nightwalk - see London in the dark 2012
- High achiever
- Driving RPYP
- The RP Conference 2012
- RP Awards 2012
- We need you
- Outreach update
- Running events
- Prize draw
- Retina International congress 2012
- Stars of our community