Hope in Focus Podcast

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.

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.

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.

Hope in Focus Podcast | Episode 7 - Shannon Boye: Founding Atsena Therapeutics & Advancing LCA1/XLRS

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.

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."