Jeanyne is our RPI.   Even after 7 dogs it was so interesting to hear a puppy raiser and an RPI talk about the journey io a guide dog.

Lance Baldo, MD, CEO at Beacon Therapeutics, talks to host Ben Shaberman about his company's fully enrolled Phase 3 VISTA clinical trial for laru-zova, a gene therapy for X-linked retinitis pigmentosa (RPGR mutations) that's showed promising results in earlier trials. They also discuss Beacon's forthcoming clinical trial for its dry age-related macular degeneration gene therapy.

Eye on the Cure Podcast | Episode 92: Lance Baldo, MD

Durable vision improvements were also observed out to 18 months for previously dosed adult patients in the trial.

Opus Reports Vision Improvements for Three Pediatric Patients in Phase 1/2 Clinical Trial for LCA5 Gene Therapy

The emerging therapy improved vision for some participants in an earlier clinical trial.

Sepul Bio’s LCA10 RNA Therapy Moves into Phase 3 Clinical Trial

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.

Hope in Focus Podcast | Episode 3 - Behind the Scenes: Patient Advocacy in Gene Therapy

October 17, 2025. Sam Seavey, founder and host of the acclaimed The Blind Life YouTube channel, talks with host Ben Shaberman about his journey with Stargardt disease, some of the latest assistive technologies, and how the 900+ videos on The Blind Life can be informative and helpful for people with low vision.

Eye on the Cure Podcast | Episode 93: Sam Seavey

The approach may provide better visual acuity than current optogenetic therapies in clinical trials.

SparingVision Launches Clinical Trial for Therapy to Re-Activate Dormant Cones in Advanced RP

October 31, 2025. Dr. Victoria Claire has commissioned more than 200 sculptures, received an honorary doctorate, and is pursuing a PhD. She talks with host Ben Shaberman about her journey with retinitis pigmentosa, and how blindness has provided her with new and profound insights into herself and perceiving the world. Visitors to her current exhibition, "The Sense of Sculpture" (Oct. 18 - Nov. 1) at The Art House in Wakefield, England, are interacting with her sculptures tactilely in complete darkness.

Eye on the Cure Podcast | Episode 94: Dr. Victoria Claire

Join Ben Shaberman with Jeanyne Gembarski, Region Puppy Instructor in the Puppy Raising Program, and Annemarie Seifert, volunteer Puppy Raiser, both from Guiding Eyes for the Blind, as they take you behind the scenes of raising and training guide dogs.

They walk through the two-year journey from puppy raising to guide dog graduation, sharing what it takes to care for, bond with, and build trust with these extraordinary animals. Jeanyne and Annemarie discuss daily responsibilities, challenges, and surprises and share memorable stories from their experiences. Discover how anyone, even without prior dog experience, can become a puppy raiser and support the development of future guide dogs.

This is Part 1 of our two-part guide dog series—stay tuned for Part 2!


Hope in Focus Podcast | Episode 4 - Part 1: The Start of a Guide Dog’s Journey

Greta Streimikyte, a blind para-athletic running champion from Ireland, talks to host Ben Shaberman about growing up with substantial vision loss from retinopathy of prematurity and her competitive running career. Greta has won gold in the women's 1500 meters at the 2018 and 2021 European Para Athletic Championships and is a three-time Paralympian.

Eye on the Cure Podcast | Episode 95: Greta Streimikyte

The Foundation funded preclinical studies for the approach and launched Opus. 

Opus Genetics Launches Gene Therapy Clinical Trial for Best Disease

The Hope in Focus Podcast, hosted by Ben Shaberman, brings monthly stories and insights to the Leber congenital amaurosis (LCA) and inherited retinal disease (IRD) community.  Together, we discuss personal stories, research and scientific updates—including gene therapy and drug development—tools and resources that support accessibility and independence, and insights to help families better understand early-onset vision loss.

Hope in Focus is dedicated to generating awareness, raising funds for research, and providing support, education and outreach to the LCA and IRDs.

Hope in Focus Podcast | Episode 4 - Part 1: The Start of a Guide Dog’s Journey

Hope in Focus

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