Foundation Fighting Blindness

Josh Steinberg and his father, Jon, talk with host Ben Shaberman about their close-knit family's journey with Josh's vision loss and eventual diagnosis of retinitis pigmentosa, as well as their volunteer leadership roles in driving the Foundation's mission. Jon is Chair of the Foundation's Science Committee and Vice Chair for Science on the Board. Josh is the former Chair of the Strategic Council and also a Board director.

Lindsey Rambo, a special education teaching assistant, mom, and wife, talks to host Ben Shaberman about her journey with Leber congenital amaurosis 5 (LCA5), participation in Opus Genetics' LCA5 gene therapy clinical trial, and her appearance on Good Morning America to tell her story about meaningful vision improvements.

The company has also fully enrolled the Phase 2/3 VISTA clinical trial for its XLRP gene therapy.

Dr. Deniz Dalkara, a research director at INSERM in France, talks to hose Ben Shaberman about her emerging gene-agnostic, gene therapy designed to restore cone-mediated vision in people with advanced retinitis pigmentosa. Known as SPVN20 and clinically developed by SparingVision, the treatment recently moved into a clinical trial in Europe. Dr. Dakara also discusses her earlier work in retinal gene and optogenetic therapy development. This episode is sponsored by Boehringer Ingelheim.

Tinlarebant slowed disease progression by 36 percent in the Dragon Phase 3 clinical trial.

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

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. This episode is sponsored by Boehringer Ingelheim.

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. This episode is sponsored by Boehringer Ingelheim and Johnson & Johnson.

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

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. This episode is sponsored by Boehringer Ingelheim and Johnson & Johnson.