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 LCA 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.
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.
