Foundation Fighting Blindness

Dr. Zuhal Butuner, chief medical officer at Sepul Bio, talks with host Ben Shaberman about her company's two emerging RNA therapies – sepofarsen (for LCA10) and ultevursen (for USH2A) – formerly in clinical trials sponsored by ProQR. Dr. Butuner discusses how the RNA treatments work, what was learned from earlier clinical trials, and Sepul Bio's plans to move the therapies back into human studies.

The USH1B trial is the first ever for a dual AAV gene therapy delivered to the retina.

The Phase 3 trial is expected to begin in Q1 2025.

Hannah Scanga, the supervisor of genetic counseling and the ocular genetics service at the University of Pittsburgh Medical Center, talks to host Ben Shaberman about the basics of genetic testing and counseling, as well as deeper topics such as inheritance patterns, reasons for variations in disease severity, and variants of unknown significance.

This episode of Eye on the Cure Podcast is sponsored by Johnson & Johnson.

Leonide Saad, PhD, founder and chief scientific officer of the biotech Alkeus, talks to host Ben Shaberman about his company’s emerging therapy, gildeuretinol, a modified form of vitamin A which has performed well in clinical trials for people with Stargardt disease.

This episode of the Eye on the Cure Podcast is sponsored by Alkeus Pharmaceuticals.

Check out this exclusive Beacon Story podcast with WROC’s Adam Chodak and professional Para triathlete Deb Chucoski as they discuss living with Stargardt disease and the amazing achievements of those who refuse to let it define them.

Deb’s journey is a testament to the power of resilience and determination. Hear her story and how the Paralympic Games provide a platform for athletes with vision loss and any disability to showcase their extraordinary talents!

This special Foundation Fighting Blindness Beacon Story podcast episode is sponsored by Alkeus Pharmaceuticals.

Previously, the formula was thought to only reduce risk of early age-related macular degeneration advancing to late-stage disease

July 26, 2024. Karen Petrou, the new board chair at the Foundation, talks to host Ben Shaberman about her vision for the Foundation moving forward. Karen has been an active director on the Foundation’s board for nearly two decades. She is co-founder and managing partner of Federal Financial Analytics, a firm providing analytical and advisory services on legislative, regulatory, and public-policy issues affecting financial services companies. Karen has RP and lives in Washington, DC, with her guide dog, Ike.

Speakers: Todd Durham, PhD; Kristin Macdonald and Thomas Mendel, MD, PhD

This session will provide clinician and participant perspectives on inherited retinal disease clinical trials and discuss the importance of natural history studies for interventional clinical trials.

Speakers: Dan Chung, DO, MA; Michael Voevodsky, MBA abd Jami Kern, MBA, PhD

This session will discuss gene agnostic therapeutic approaches, which are applicable to multiple retinal diseases and patients at early to mid-stage of disease progression.