In Focus Series

Episode 2: Claudette Medefindt & Karen Denton, Retina South Africa

In episode two of In-Focus, the new Retina International podcast series, Avril is joined by Claudette Medefindt and Karen Denton from Retina South Africa. Claudette has been involved with Retina South Africa for 40 years and is currently Head of Science at Retina South Africa, as well as Deputy President of Retina International, while Karen holds the position of Age-related Macular Degeneration (AMD) Ambassador, bringing with her a wealth of experience in patient counselling and education.

In this episode, Claudette and Karen discuss how the current COVID-19 crisis has impacted South Africa, with lockdown measures enforced and the strain this has put on the healthcare system. Claudette and Karen also delve into the growing concerns among people living with retinal conditions who are receiving anti-VEGF, highlighting certain barriers to treatment which exist and what efforts are being made to ensure more equitable healthcare.

Claudette and Karen also talk to Avril about Retina South Africa’s research projects both past and present, particularly genetic profiling of the indigenous population with respect to IRD’s. They explain how these genetic tests are made available to people who would otherwise not be able to access it and discuss the remarkable progress they have made, achieving a genetic result for 60% of participants and contributing to clinical trials.

This episode takes us through the challenges facing patient organisations around the globe in the current climate, but most importantly highlights the success that can be had with dedication, organisation and a clear focus.

Episode 3: Juliana Sallum

In this week’s episode of “In-Focus”, Avril welcomes Professor Juliana Sallum to the podcast. Juliana is an ophthalmologist who specialises in inherited retinal degenerations (IRDs) and genetics and is a professor at the University of Sao Paulo, Brazil.

In this podcast, Juliana takes us through the unprecedented challenges that she and her colleagues face as ophthalmologists during COVID-19. She explains that although the current circumstances have resulted in physical consultations being postponed, virtual contact and telemedicine have emerged as key players which allow her to check in with her patients, discuss any concerns they may have and ensure that they can prepare a treatment strategy, once COVID-19 has passed.

While many clinics have been temporarily taken over to be used for COVID-19 patients in Brazil and in other parts of the globe, Juliana reassures us that emergency operations, such as retinal detachments are still a priority and will be operated on as necessary. People living with other retinal conditions, including age-related macular degeneration (AMD) and diabetes-related eye diseases (DEDs) who receive anti-VEGF treatment are also being thoroughly assessed remotely, using virtual communication tools to identify those who are stable and others who require more urgent treatment.

Although telemedicine and the virtual communication tools used right now to check in with patients are not perfect, Juliana expresses her belief that this style of remote access to care will be a key strategy in the future to ensure more equitable access to quality healthcare, in particular people in the ageing population and will also help to relieve some of the strain on our healthcare systems. Planning for the aftermath of COVID-19 and organising a strategic plan to deal with the long waiting lists of patients to receive treatment is a primary part of Juliana’s work at this time and she believes telemedicine will have a crucial role in facilitating this.

Regarding clinical trials, Juliana explains that every effort is being made to accommodate people in clinical trials and adjust the scheduled treatment intervals without disrupting the legitimacy of the trial. First and foremost is patient safety however, and all these clinical trials are re-organised with this as the central focus.

This is a really insightful and comprehensive interview in which Juliana addresses many pressing concerns in the retina community, particularly among people living with chronic retinal conditions that require regular treatment and how this is being adjusted in light of COVID-19.

Episode 4: Professor Joe Carroll & Adaptive Optics

In this week’s episode of the Retina International In-Focus podcast series, Avril welcomes Professor Joe Carroll to speak about adaptive optics and how it is revolutionising retinal imaging techniques, to produce more detailed and accurate images. Joe is a Professor of Ophthalmology and Visual Sciences at the Medical College of Wisconsin and is the head of their Advanced Ocular Imaging Program (AOIP).

Adaptive optics is a form of technology applied to imaging techniques to compensate for imperfections within the eye which interfere with the quality of images and ultimately improve our understanding of how retinal conditions develop and progress. Adaptive optics is used to provide us with a better understanding between the structure and function of the visual system and has been very successful in helping to monitor retinal disease progression cell-by-cell.

In today’s episode, Joe talks Avril through the challenges that retinal professionals and researchers face when examining the visual system and identifying retinal diseases at an early stage to allow for effective treatment intervention. Although the retina is very accessible for imaging, the detail and high resolution required for examining at the cellular level is not available in current imaging techniques, such as fundus photography and optical coherence tomography (OCT).

This is due to imperfections within the eye which distort the captured images and prevent images which can assess the integrity of the eye at the cellular level. Joe explains how adaptive optics can correct for these imperfections and has been used in experiments to study how the eye responds to treatment by examining the rate of cell survival in treated eyes compared to untreated eyes. In this way, improvements made to the visual system can be recognised at a deeper level, instead of simply using visual function as the only indicator of a successful therapy.

As this technology advances and becomes more sophisticated, the incorporation of adaptive optics with existing retinal examination techniques will allow for a greater understanding of how retinal diseases develop and indicate appropriate times for treatment which will help maintain greater visual capacity.

Episode 5: Michael Griffith

Episode 6: Marina Sutter

This week, Dr. Orla Galvin Director of Research Policy at Retina International hosts and welcomes  Marina Sutter, Interim Chair of the Retina International Youth Council to our latest episode in a series of In-Focus podcasts.

At the age of 12, Marina was diagnosed with an inherited retinal disease (IRD) called Stargardt Disease, a form of Juvenile Macular Degeneration. Although a challenging time for her, Marina remembers fondly the incredible support she received from her teachers and parents, who supported and empowered her throughout her journey. However, through Marina’s involvement and experience in the retina community at large, she is acutely aware that many young people have not had the same positive experiences, with many lacking similarly empowering figures in their lives.

Through her role at Retina International as Interim Chair of the Retina Youth Council, Marina is working to provide comprehensive resources and social supports for young people living with retinal degenerations globally. Additionally, Marina believes this will help to establish a wide-reaching and welcoming community for young people to share their experiences, meet other young people in similar circumstances and realise they are not alone, something Marina regrets to admit she has heard too often from young people in the past.

Episode 7: Professor John Flannery

This week, Avril welcomes Professor John Flannery to the Retina International In-Focus podcast. John is Professor of Vision Science and Neuroscience in the Department of Molecular Biology in University of California, Berkeley.

In this episode, John’s explains the concept of optogenetics; a technique which involves light and genetic engineering (editing the genetic information) to control neuronal cells, and how he is applying it in his research to restore normal light-sensing capability to the photoreceptor cells of the retina and treat retinal conditions.

Photoreceptor cells are responsible for detecting light which enters the eye and converting it to electrical impulses which are delivered to the brain, so images can be formed of our external environment. As many common and rare retinal conditions are caused by the degeneration and death of the rod and cone photoreceptor cells to cause a decline in peripheral or central vision respectively.

In addition to discussing optogenetics, John also discusses other forms of gene therapy which are being investigated in treating a number of common and inherited retinal diseases, including Age-related Macular Degeneration and Leber Congenital Amaurosis.

Episode 8: Carol Brill

Episode 9: Chad Andrews

In episode 9 of the In-Focus podcast, Avril is joined by Chad Andrews from Fighting Blindness Canada (FBC). Chad works at FBC as Senior Advisor on Policy, Equity and Access. In their discussion, Avril and Chad discuss the multifarious projects and educational initiatives he has been involved in with FBC, including Vision Class and the Young Leaders Program as well as other newly established projects to support FBC’s members during COVID-19.

Chad speaks in detail about some of FBC’s current initiatives, including Vision Quest and FBC’s ongoing webinar series View Point, which ranges from presentations on scientific research, such as stem-cell therapy, to discussions on social distancing and coping with sight loss during COVID-19. Registration for these webinars is free and can be done on the FBC website, where recording for previously-held meetings can also be found.

Chad also explains to Avril the burden-of-illness studies being conducted by FBC during this time to understand the challenges and obstacles of living with vision loss from the patient’s perspective, as well as their Cycle For Sight fundraising event which is scheduled for Saturday June 20th 2020.

It’s certainly not an episode to be missed!

Episode 10: Petia Stratieva

Episode 11: Russell Wheeler

Episode 12: Brian Mansfield PhD

Episode 13: Professor Jose Carlos Pastor

On this week’s episode of the RI In-Focus podcast, Dr. Orla Galvin welcomes Professor Jose Carlos Pastor from the Institute for Applied Ophthalmology (IOBA) in Valladolid, Spain, who is Director of the IOBA retina group.

Jose is also an ophthalmologist and joins Orla to discuss his experience of COVID-19 and its impact on ophthalmology which he believes is not being considered a priority health discipline, particularly from his experience within the clinic.

Additionally, Jose speaks very passionately about the need for adopting a multidisciplinary and more unified approach to advancing research in all specialties, something he feels will emerge after the COVID-19 pandemic as scientists from various research collaborate in earnest to develop a safe and effective vaccine.