Retina International

In episode 5 of the In-Focus podcast, Avril is joined by Michael Griffith. Michael was a founder of Fighting Blindness Ireland in 1983 and has been a central figure in the retina community, advocating for the progression of retinal research and the establishment of policies which will support people living with retinal conditions, for over 20 years.

Michael lives with Retinitis Pigmentosa and is a firm believer in the power of mindfulness to re-connect us with the present moment, develop resilience and offer tools to help us cope with the struggles of daily life. In addition to serving the retina community, mindfulness is beneficial for everyone and is especially important during these challenging times in face of the COVID-19 pandemic.

Since retiring as CEO from Fighting Blindness Ireland, Michael has been involved in promoting mindfulness in Ireland and abroad, and is a proud co-founder of Mindful Nation Ireland. Through this work, Michael hopes to spread the practice of mindfulness and promote its integration into wider society, engaging with politicians and leaders both in Ireland and on an international scale so that we can begin to lead a more content and fulfilling life together.

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.

In this 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.

In episode two of In Focus, 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.

In the first episode of our new podcast series, Avril speaks with Retina International President Christina Fasser about the effect COVID-19 has on her life as a person living with Retinitis Pigmentosa, specifically the severe consequences of social distancing on her active lifestyle and the adjustments she has made to keep physically active. Christina also explains how she is using this extra time at home in a positive way, to reconnect with friends and family, revisiting old interests and to practice the art of handwritten letters.

Fiona Waters begins series 2 of Retina International’s In Focus podcast by welcoming Laura Whelan.

Laura Whelan is a third-year PhD candidate in Prof. Jane Farrar’s lab in Trinity College Dublin. Laura’s work is carried out as part of the Target 5000 study, which aims to provide clinical and genotyping services for people living in Ireland with an inherited retinal disease. Laura has a particular interest in non-coding DNA variants and their role in these diseases. Laura is also interested in making science more open to the public and can be found on Twitter and Instagram @phdwithlaura, where she shares her work and life as a PhD student.

In this week’s episode, Laura talks about her research and who and what motivated it. She also discusses patient engagement and why it’s so valuable for researchers to involve patients in their process. In addition, Laura discusses science communication, how she became interested in it, and why she chooses to share her research with the world. You can learn more about Laura and her life as PhD student by visiting her social media pages.

The latest episode of the Perspectives Podcast by Retina International, co-hosted by David Sanchez and Avril Daly, focuses on the importance of mental health in the rare eye disease community. Featuring guest Matt Bolz-Johnson, a mental health lead at EURORDIS-Rare Diseases Europe, the discussion explores:

• Why mental health matters: Beyond just medical treatment, quality of life and emotional well-being are crucial for individuals with degenerative eye conditions.
• Challenges of rare diseases: The psychological impact of diagnosis, uncertainty, and social isolation are often overlooked but deeply affect patients and their families.
• Policy and advocacy: Mental health needs to be addressed beyond healthcare, including in employment, education, and social policies.
• Community & Support: Networks like Retina International’s study on mental health and Matt’s partnership network help individuals connect, share, and access resources.
• Global Perspective: While mental health is becoming a policy priority post-COVID, many regions still lack structured support.

This discussion highlights the need for integrated mental health strategies to support individuals with rare diseases, ensuring they have the tools to manage emotional challenges effectively.

A transcript is available to download here in English and Spanish in Microsoft Word format.

David Sanchez from Farpe, speaks with Bart Leroy, David Keegan, Frans Cremers, Isabella Audo, Jean Bennett and Franz Badura about:

1. Their feelings about the Retina International World Congress
2. What’s their perception on research in the near future
3. A message to the Retina Patient Community

Canal Retina conversamos con Pablo Palazón Riquelme, inmunólogo, divulgador científico y autor del libro Ciencia Idiota, sobre ensayos clínicos. Exploramos qué son y su funcionamiento en la búsqueda de tratamientos para distrofias de retina, destacando fases, riesgos y ventajas para pacientes.

Canal Retina spoke with Pablo Palazón Riquelme, immunologist, science communicator and author of the book Ciencia Idiota, about clinical trials. We explore what they are and how they work in the search for treatments for retinal dystrophies, highlighting phases, risks and advantages for patients.

Meet our hosts, David Sanchez and Avril Daly. Each month, we feature powerful personal stories from our members, offering a unique window into their experiences, challenges, and triumphs. In addition to these firsthand accounts, we’ll engage with leading researchers, clinicians, policymakers, and industry innovators to explore the latest advancements in retina research, cutting-edge care solutions, and the evolving landscape of support for those living with retinal conditions. Tune in for thought-provoking conversations that illuminate the path forward in the fight against retinal degenerative diseases.