Foundation Fighting Blindness

The company is also planning to conduct the clinical trial at sites in the EU.

December 20, 2024. Dr. Sheldon Rowan, a professor and researcher at Tufts University, talks to host Ben Shaberman about the impact of the glycemic index, microbiome, and diet on the development of age-related macular degeneration and optimization of overall retinal health. Dr. Rowan will also discuss his grant from the Foundation and the Free Family for studying diet and AMD risk. The grant is als...

The company has also launched a natural history study of patients to inform the planned clinical trial.

Known as ultevursen, the USH2A RNA therapy was licensed from ProQR.

December 6, 2024. Bob Bell, PhD, chief scientific officer at Ascidian Therapeutics, talks with host Ben Shaberman about STELLAR, the company's Phase 1/2 clinical trial for its emerging RNA-rewriting therapy for Stargardt disease (ABCA4 mutations). Dr. Bell also provides overviews of Stargardt disease, the role of RNA in cells, and the advantages of RNA re-writing over other genetic treatment appro...

The companies are planning a Phase 3 clinical trial for the promising gene therapy.

November 15, 2024. When the Lemay-Pelletier family from Montreal learned that three of their four children were losing vision from retinitis pigmentosa, they made the bold decision to spend 15 months traveling the world to give their kids as many visual memories as possible. Podcast host Ben Shaberman talks to the family about their many incredible adventures and the National Geographic documentar...

The Foundation funded Dr. David Gamm for development of the induced pluripotent stem cell approach to be used in the trial.

The 36-participant trial will take place at multiple sites in Australia.

October 25, 2024. Sharon King, co-founder and president of Taylor’s Tale, talks to host Ben Shaberman about her family's journey when her daughter Taylor was diagnosed with Batten disease, a life-limiting, neurodegenerative disease that includes vision loss as a symptom. Taylor’s Tale is raising awareness of, and research funding for, Batten disease. Sharon is also a tireless advocate for the need...

Merger will provide additional capital for gene therapy development.

#WhiteCaneDay is here! Let's celebrate the strength and independence the white cane symbolizes! Do you use a white cane or other tools? Share your story with #ShareYourVision! www. FightingBlindness.org/ShareYourVision

Researchers hope the molecule will slow the vision and hearing loss associated with USH3.

To help spread awareness during October’s Blindness Awareness Month, the Foundation Fighting Blindness invites you to share your unique experiences with blinding diseases through our social media campaign, #ShareYourVision. Just as no two fingerprints are alike, our perception of the world through our eyes is equally distinct. Let’s come together as a beacon of hope, emphasizing the resilience fou...

October 11, 2024. Dr. Kia Washington, a professor in the Division of Plastic and Reconstructive Surgery at the University of Colorado, Anschutz Medical School, talks to host Ben Shaberman about her work in whole eye transplantation. Dr. Washington is also the first Black female plastic surgeon in the country to hold the title of full professor and she discusses the challenges of ensuring diversity...

To help spread awareness during October’s Blindness Awareness Month, the Foundation Fighting Blindness invites you to share your unique experiences with blinding diseases through our social media campaign, #ShareYourVision. Just as no two fingerprints are alike, our perception of the world through our eyes is equally distinct. Let’s come together as a beacon of hope, emphasizing the resilience fou...

“Tatel’s humility and tenacity shine. The result is a stirring reflection on an extraordinary life,” Publishers Weekly

Known as 4D-150, the wet AMD gene therapy performed well in a Phase 2b clinical trial.

September 20, 2024. 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...

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.

August 23, 2024. 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 Po...

August 9, 2024. 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 los...

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