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Hope in Focus Podcast

Hope in Focus Podcast

By: Hope in Focus
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 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
Episodes
  • 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 mins
  • 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 mins
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