Hope in Focus Podcast

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.

Hope in Focus Podcast is a education podcast hosted by Hope in Focus, with 13 episodes on record and a Required Pod Score of 80.

Hope in Focus hosts Hope in Focus Podcast, a education show with 13 episodes published.

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  Hope in Focus Podcast

  Hope in Focus Podcast | Episode 13 - Inside the LCA10 Clinical Trial: A Conversation with Sepul Bio

  Sep 2, 202635 min

  In this episode, we speak with Mike, Chief Operating Officer at Sepul Bio, about the company’s promising RNA therapy for LCA10, currently being studied in a Phase 3 clinical trial. Mike shares how he became involved in the inherited retinal disease space and discusses his role at Sepul Bio. We also explore the clinical trial process, how sepofarsen works, the differences between RNA and DNA therapies, and what patients can expect during treatment. Throughout the conversation, Mike emphasizes the importance of patient voices and involvement in the development of new treatments. To learn more about the LCA10 clinical trial, contact Sepul Bio at contact@sepulbio.com or visit their website.

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  Hope in Focus Podcast

  Hope in Focus Podcast | Episode 12: Understanding Clinical Trials with Dr. Jason Comander

  Jul 6, 202639 min

  Dr. Jason Comander is the Ayub Family Chair in Ophthalmology and Director of the Inherited Retinal Disorder Service at Mass Eye and Ear. He has led several groundbreaking clinical trials, including delivering the first commercial dose of LUXTURNA® for LCA2 caused by RPE65 mutations and serving as the lead investigator and surgeon for the first CRISPR-Cas9 gene editing trial for LCA10 caused by CEP290 mutations. In this episode, Dr. Comander explains how gene therapies and gene editing approaches differ, shares insights from his experience leading clinical trials, and discusses what families should know when considering trial participation. He also explores emerging treatment approaches, including optogenetics and cell therapies, and offers an optimistic perspective on the future of inherited retinal disease research.

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  Hope in Focus Podcast

  Hope in Focus Podcast | Episode 11 - Finding Her Voice: A Conversation with Sarah Hardwig

  Jun 3, 202642 minS0

  In this episode, we sit down with emerging country singer-songwriter Sarah Hardwig, who was diagnosed at just five months old with LCA10 CEP290. Sarah’s vision loss has never stopped her from pursuing her passion for music, showcasing her natural talent, or sharing her voice with others. Sarah opens up about growing up with vision loss, navigating school, and adapting to college life by learning new environments and classroom layouts. She also shares how she discovered her love for singing and songwriting, along with some of the biggest challenges she faced during college. Throughout the conversation, Sarah reflects on the vu...

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  Hope in Focus Podcast

  Hope in Focus Podcast | Episode 10 - Insights from a Teacher of the Visually Impaired

  May 13, 202627 minS0

  In this episode, we’re joined by Beth, an education consultant with the Bureau of Education Services for the Blind at the Connecticut Department of Aging and Disability Services. With more than 20 years of experience as a certified Teacher of Students with Visual Impairments (TVI), Beth supports children and their families as they navigate the educational journey with low vision. She shares how she found her path into this field and offers practical guidance for parents who are just getting started—covering everything from understanding available resources to making decisions about mainstream education versus schools for the blind. Beth also talk...

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  Hope in Focus Podcast

  Hope in Focus Podcast | Episode 9 - Vivien’s Wild Ride: Who Am I Without Vision?

  Apr 22, 202639 minS0

  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 Wi...

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