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Retina UK

Retina UK

By 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.
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Webinar: Michael Gilhooley, Optogenetics

Retina UKNov 01, 2021

00:00
58:56
Webinar: Fitness, blisters and fundraising ... being part of #TeamRetinaUK TCS London Marathon 2024

Webinar: Fitness, blisters and fundraising ... being part of #TeamRetinaUK TCS London Marathon 2024

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.

Mar 22, 202448:29
Look Forward - Spring 2024 - Issue 182

Look Forward - Spring 2024 - Issue 182

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 this recording 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

Mar 15, 202457:13
e-Newsletter February 2024
Feb 15, 202409:47
Cataract surgery for people living with inherited sight loss

Cataract surgery for people living with inherited sight loss

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, is joined 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.

Feb 02, 202418:25
Webinar: A family’s experience of clinical trial participation

Webinar: A family’s experience of clinical trial participation

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.

Jan 26, 202450:23
e-Newsletter - January 2024

e-Newsletter - January 2024

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.

Jan 12, 202411:29
Blindingly Chatty - Episode 5

Blindingly Chatty - Episode 5

In this last episode of Blindingly Chatty, Laura Tyler is interviewed by Paula McGrath about her internship at Retina UK, her journey before 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.

Jan 12, 202436:11
Blindingly Chatty - Episode 4

Blindingly Chatty - Episode 4

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.

Jan 11, 202437:08
Webinar: Artificial Intelligence (AI) with Dr Nikolas Pontikos

Webinar: Artificial Intelligence (AI) with Dr Nikolas Pontikos

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.

Dec 07, 202358:13
Look Forward - Winter 2023 - Issue 181

Look Forward - Winter 2023 - Issue 181

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

Nov 23, 202353:20
Webinar: Support through Access to Work - World Sight Day Special

Webinar: Support through Access to Work - World Sight Day Special

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.

Oct 13, 202301:03:33
e-Newsletter October 2023

e-Newsletter October 2023

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.

Oct 11, 202307:27
The Blind Poet, Dave Steele
Oct 11, 202349:35
QTVI, ECLO, ROVI - what do they mean?

QTVI, ECLO, ROVI - what do they mean?

This podcast covers the most important professionals who work with the sight loss community, along with their abbreviations and what they do to improve people’s lives.

Oct 02, 202327:32
Ask the Expert: Samantha de Silva
Sep 29, 202359:09
e-Newsletter September 2023
Sep 21, 202309:21
Impact Report 2022

Impact Report 2022

The difference we made in 2022

Sep 05, 202322:53
E-newsletter August 2023

E-newsletter August 2023

E-newsletter August 2023

Aug 23, 202306:28
Blindingly Chatty - Episode 3

Blindingly Chatty - Episode 3

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.

Aug 22, 202359:13
Look Forward - Summer 2023 - Issue 180

Look Forward - Summer 2023 - Issue 180

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!

Jul 31, 202353:43
Blindingly Chatty - Episode two

Blindingly Chatty - Episode two

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).

Jul 03, 202354:19
Retina UK Annual Conference - 24 June 2023

Retina UK Annual Conference - 24 June 2023

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:

  • Retina UK vision of treatments for all
  • 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.
Jun 26, 202304:14:19
Retina UK Professionals' Conference - 23 June 2023
Jun 26, 202303:54:07
E-newsletter June 2023

E-newsletter June 2023

Retina UK E-newsletter June 2023

Jun 16, 202308:17
Retina UK - Introduction to the charity and a guide to services
Jun 15, 202312:03
Blindingly Chatty - Episode one

Blindingly Chatty - Episode one

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.

Jun 14, 202337:49
Retina UK Professionals' Conference - 23 June 2023 - PROGRAMME
Jun 13, 202316:54
Retina UK Annual Conference - 24 June 2023 - PROGRAMME
Jun 13, 202329:05
E-Newsletter May 2023
May 22, 202311:01
Webinar: Hair care and styling with Anna Cofone

Webinar: Hair care and styling with Anna Cofone

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

May 19, 202301:31:43
Volunteer Impact Report 2023
May 10, 202310:21
E-Newsletter April 2023
Apr 18, 202317:28
Webinar: Getting involved with Retina UK, the value of volunteering

Webinar: Getting involved with Retina UK, the value of volunteering

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 employment Our 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.

Apr 14, 202352:07
Unproven treatments - we talk to BBC reporter Ramadan Younes and Professor Robert Maclaren

Unproven treatments - we talk to BBC reporter Ramadan Younes and Professor Robert Maclaren

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-faith⁠ This 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

Mar 27, 202327:56
Webinar: Low vision services, aids and equipment

Webinar: Low vision services, aids and equipment

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.

Mar 24, 202301:02:22
Look Forward - Spring 2023 - Issue 179
Mar 16, 202350:53
What is the UK Inherited Retinal Dystrophy Consortium (UKIRDC) and why does it exist?

What is the UK Inherited Retinal Dystrophy Consortium (UKIRDC) and why does it exist?

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.


Feb 27, 202341:04
Webinar: Ask the expert with Simon Keightley

Webinar: Ask the expert with Simon Keightley

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.

Feb 24, 202301:01:34
E-newsletter February 2023
Feb 17, 202309:08
Webinar: Supporting Retina UK and what it can do for you

Webinar: Supporting Retina UK and what it can do for you

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.

Feb 01, 202301:01:32
Legacies - why they are so important to Retina UK

Legacies - why they are so important to Retina UK

A chat with our founder, Lynda Cantor MBE and our (former) Head of Fundraising, Deborah Laing.

Jan 27, 202315:02
e-Newsletter January 2023
Jan 20, 202306:35
Webinar: Maximising your income - Social security support for people living with sight loss

Webinar: Maximising your income - Social security support for people living with sight loss

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.

Dec 12, 202257:04
Oxfordshire information event (online)

Oxfordshire information event (online)

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.

Dec 07, 202201:58:16
e-Newsletter December 2022
Dec 06, 202206:17
The Big Give Christmas Challenge 2022
Nov 28, 202207:00
Look Forward - Winter 2022 - Issue 178
Nov 17, 202258:11
Webinar: Makeup tips and tricks with Bhavini

Webinar: Makeup tips and tricks with Bhavini

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.

Nov 10, 202248:17
e-Newsletter October 2022
Oct 21, 202206:57
Webinar: Looking after your emotional health

Webinar: Looking after your emotional health

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.

Sep 30, 202201:06:52