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Hope in Focus Podcast

Hope in Focus Podcast

Di: Hope in Focus
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A proposito di questo titolo

 The Hope in Focus Podcast, hosted by Ben Shaberman, brings monthly stories and insights to the Leber congenital amaurosis (LCA) and inherited retinal disease (IRD) community. Together, we discuss personal stories, research and scientific updates—including gene therapy and drug development—tools and resources that support accessibility and independence, and insights to help families better understand early-onset vision loss. Hope in Focus is dedicated to generating awareness, raising funds for research, and providing support, education and outreach to the LCA and IRDs.All rights reserved
Episodi
  • Hope in Focus Podcast | Episode 9 - Vivien’s Wild Ride: Who Am I Without Vision?

    Hope in Focus Podcast | Episode 9 - Vivien’s Wild Ride: Who Am I Without Vision?
    Apr 22 2026
    Vivien Hillgrove led a remarkable 50-year career as a film editor for box office hits such as Amadeus, Blue Velvet and The Right Stuff. However, when she began losing her sight to age-related macular degeneration (AMD), she was faced with the challenge of redefining herself, how she moved through the world, and was forced to confront a profound question: Who am I without vision? In this episode, we talk with Vivien about her experience with vision loss, identity, creativity, and the emotional realities of adapting to a new way of life, as explored in her brilliant PBS documentary, Vivien’s Wild Ride. Her story captures both the richness of a full creative life and the grief, uncertainty, and transformation that can come with losing sight. Ultimately, Vivien reflects on how vision loss became not just a challenge, but a turning point that taught her how to embrace both the beauty and the hardest parts of life. Vivien’s Wild Ride is available to stream for free on PBS through the end of April.
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    39 min
  • Hope in Focus Podcast | Episode 8 - Odylia Therapeutics: Moving LCA6 Research Forward

    Hope in Focus Podcast | Episode 8 - Odylia Therapeutics: Moving LCA6 Research Forward
    Mar 3 2026
    Dr. Ashley Winslow is the CEO and Chief Scientific Officer of Odylia Therapeutics, a nonprofit biotech organization accelerating gene therapies for rare diseases, including Leber congenital amaurosis (LCA). Under her leadership, Odylia is advancing a gene therapy program for LCA6 caused by mutations in the RPGRIP1 gene. In this episode, Ashley shares how she entered the rare disease space, what makes Odylia’s nonprofit model unique, and where the RPGRIP1 gene therapy program currently stands. She also explains what LCA6 is, how it affects vision, and why collaboration between biotech and patient communities is essential to moving treatments forward.
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    32 min
  • Hope in Focus Podcast | Episode 7 - Shannon Boye: Founding Atsena Therapeutics & Advancing LCA1/XLRS

    Hope in Focus Podcast | Episode 7 - Shannon Boye: Founding Atsena Therapeutics & Advancing LCA1/XLRS
    Feb 11 2026
    Dr. Shannon Boye is the co-founder and Chief Scientific Officer of Atsena Therapeutics, a gene therapy company advancing a treatment for LCA1 (GUCY2D), with a Phase 3 clinical trial coming soon. She is also a professor at the University of Florida, where she serves as Chief of the Division of Cellular and Molecular Therapy in the Department of Pediatrics and runs her own gene therapy research lab. With more than 20 years of experience in the field, Shannon joins us to share the story of her scientific journey—how she got started in research, her experiences working with big pharma, and what ultimately led her to co-found Atsena Therapeutics. She also discusses the Phase 1/2 clinical trial results for Atsena’s programs in LCA1 and X-linked retinoschisis (XLRS), shares powerful stories about patients, and explains how organizations like Hope in Focus help connect biotech companies with the patient community and build meaningful, collaborative relationships.
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    37 min
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