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
  • Hope in Focus Podcast | Episode 6 - Brett Devloo: Stay on the Board

    Hope in Focus Podcast | Episode 6 - Brett Devloo: Stay on the Board
    Jan 16 2026
    Joining Ben Shaberman is Brett Devloo—blind skateboarder, creative force, and living proof that identity doesn’t disappear when vision does. After suddenly losing his sight to Leber’s Hereditary Optic Neuropathy (LHON), Brett was forced to reimagine who he was and what his future could be. In this episode, Brett reflects on losing his vision and how skateboarding became a place of familiarity and grounding, helping him navigate a world that had suddenly changed—alongside the friends and community who helped shape who he is today. Brett also talks about his upcoming documentary premiering in Canada and the mission behind his clothing brand. At the heart of it all is Brett’s message: “Stay on the board. End on the board. No matter what board you’re on."
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    40 min
  • Hope in Focus Podcast | Part 2: Life with a Guide Dog – Independence, Confidence, and Companionship

    Hope in Focus Podcast | Part 2: Life with a Guide Dog – Independence, Confidence, and Companionship
    Dec 19 2025
    Join Ben Shaberman as he speaks with Nicolai Priebe and Eric Brinkman about the profound impact their guide dogs, Winsome and Charlie, have had on their daily lives. Nic shares how Winsome has given him increased confidence, independence, and motivation to go out more, while also serving as a helpful social bridge in public settings. Eric reflects on Charlie’s loyalty, reliability, and ability to help him navigate the complexities of city life, sharing humorous and memorable moments that highlight the dog’s intelligence and awareness. Both Nicolai and Eric emphasize the emotional bond they share with their guide dogs. Beyond navigation, these companions provide comfort, emotional support, and joy, offering a loving presence at the end of the day or during challenging moments. This episode highlights the extraordinary role guide dogs play, combining independence, safety, and companionship for those who rely on them.
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    35 min
  • Hope in Focus Podcast | Episode 4 - Part 1: The Start of a Guide Dog’s Journey

    Hope in Focus Podcast | Episode 4 - Part 1: The Start of a Guide Dog’s Journey
    Nov 12 2025
    Join Ben Shaberman with Jeanyne Gembarski, Region Puppy Instructor in the Puppy Raising Program, and Annemarie Seifert, volunteer Puppy Raiser, both from Guiding Eyes for the Blind, as they take you behind the scenes of raising and training guide dogs. They walk through the two-year journey from puppy raising to guide dog graduation, sharing what it takes to care for, bond with, and build trust with these extraordinary animals. Jeanyne and Annemarie discuss daily responsibilities, challenges, and surprises and share memorable stories from their experiences. Discover how anyone, even without prior dog experience, can become a puppy raiser and support the development of future guide dogs. This is Part 1 of our two-part guide dog series—stay tuned for Part 2!
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    41 min
  • Hope in Focus Podcast | Episode 3 - Behind the Scenes: Patient Advocacy in Gene Therapy

    Hope in Focus Podcast | Episode 3 - Behind the Scenes: Patient Advocacy in Gene Therapy
    Oct 9 2025
    In this episode of the Hope in Focus Podcast, host Ben Shaberman is joined by Kara Fick, Director of Patient Advocacy at Atsena Therapeutics, and Andy Bolan, Director of Patient Advocacy at Sepul Bio. Both Kara and Andy work closely with families affected by inherited retinal diseases, helping them better understand the clinical trial process and the realities of drug development. They share how they entered the field, what patient advocacy looks like day-to-day inside biotech companies, and why this work is essential for bridging the gap between researchers and the patient community. Together, they highlight how advocates support families through the clinical trial journey—making sure the patient voice remains at the center of gene therapy development.
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    43 min
  • Hope in Focus Podcast | Episode 2 - Growing Up with Vision Loss: Challenges, Humor, and Wisdom

    Hope in Focus Podcast | Episode 2 - Growing Up with Vision Loss: Challenges, Humor, and Wisdom
    Sep 18 2025
    In this episode of The Hope in Focus Podcast, host Ben Shaberman sits down with Elle St. Arnaud and Jack Morris for an honest and engaging conversation about living with an inherited retinal disease. Elle, who has LCA, and Jack, who has RP, share stories from their school years — the challenges, the funny moments, and everything in between. They talk about navigating life with limited sight, from adapting sports to figuring out social situations. Along the way, they reflect on family support, the confidence they’ve gained through independence and advocacy, and share insights for people with vision loss, parents, and caregivers.
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    42 min