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 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.
