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 | Episode 13 - Inside the LCA10 Clinical Trial: A Conversation with Sepul Bio
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.
6 Jul 2026
Hope in Focus Podcast | Episode 12: Understanding Clinical Trials with Dr. Jason Comander
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.
3 Jun 2026
Hope in Focus Podcast | Episode 11 - Finding Her Voice: A Conversation with Sarah Hardwig
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 vulnerability that comes with creating and performing music, reminding listeners that “everyone has their own story to tell, and everyone has their own way of telling it.” Stay tuned until the end of the episode for a special sneak peek of a live performance from Sarah.
13 May 2026
Hope in Focus Podcast | Episode 10 - Insights from a Teacher of the Visually Impaired
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 talks about the importance of advocacy, adapting learning materials, and building the skills students need for independence.
22 Apr 2026
Hope in Focus Podcast | Episode 9 - Vivien’s Wild Ride: Who Am I Without Vision?
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.
3 Mar 2026
Hope in Focus Podcast | Episode 8 - Odylia Therapeutics: Moving LCA6 Research Forward
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.
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.
16 Jan 2026
Hope in Focus Podcast | Episode 6 - Brett Devloo: Stay on the Board
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."
19 Dec 2025
Hope in Focus Podcast | Part 2: Life with a Guide Dog – Independence, Confidence, and Companionship
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.
12 Nov 2025
Hope in Focus Podcast | Episode 4 - Part 1: The Start of a Guide Dog’s Journey
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!
9 Oct 2025
Hope in Focus Podcast | Episode 3 - Behind the Scenes: Patient Advocacy in Gene Therapy
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.
18 Sept 2025
Hope in Focus Podcast | Episode 2 - Growing Up with Vision Loss: Challenges, Humor, and Wisdom
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.
10 Sept 2025
Hope in Focus Podcast | Episode 1 – The LCA Journey: Two Parents' Perspectives & the Founding of Hope in Focus
In this inaugural episode, host Ben Shaberman talks with Laura Manfre and David Brint—founders of two leading organizations in the LCA space. Laura is the co-founder of Hope in Focus and a current board member of the Foundation Fighting Blindness. David founded the Foundation for Retinal Research and is the former board chair of the Foundation Fighting Blindness.
They share their personal journeys as parents of children with LCA, from receiving the diagnosis to helping build the LCA community into what it is today. Hear how their experiences led to the creation of Hope in Focus and the Foundation for Retinal Research, and how those efforts continue to support and inspire families.
For those newly facing an LCA diagnosis, Laura and David offer perspective, encouragement, and practical ways to find connection, hope, and community.
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