Category: Experiences

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.

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.

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.