The Hope in Focus Podcast, hosted by Ben Shaberman, Vice President of Science Communications at the Foundation Fighting Blindness, delivers monthly conversations with individuals and families, caregivers, researchers, and advocates in the LCA and IRD community. Each episode shares 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. Whether you’re personally affected or simply curious, each episode offers hope, knowledge, and connection.
Select a platform below to listen on your favorite streaming service.
Recent Episodes
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!
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.
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.
Episode 1
The LCA Journey: Two Parents’ Perspectives/Get to know the Hope in Focus founding
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.