Hope in Focus Podcast | Episode 8 - Odylia Therapeutics: Moving LCA6 Research Forward

Hope in Focus Podcast | Episode 12: Understanding Clinical Trials with Dr. Jason Comander

Dr. Jason Comander is the Ayub Family Chair in Ophthalmology and Director of the Inherited Retinal Disorder Service at Mass Eye and Ear. He has led several groundbreaking clinical trials, including delivering the first commercial dose of LUXTURNA® for LCA2 caused by RPE65 mutations and serving as the lead investigator and surgeon for the first CRISPR-Cas9 gene editing trial for LCA10 caused by CEP290 mutations. In this episode, Dr. Comander explains how gene therapies and gene editing approaches differ, shares insights from his experience leading clinical trials, and discusses what families should know when considering trial participation. He also explores emerging treatment approaches, including optogenetics and cell therapies, and offers an optimistic perspective on the future of inherited retinal disease research.

Hope in Focus Podcast | 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.

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.