News and Articles

Recent News
March 25, 2025
Comprehensive U.S. Directory of Pediatric Retinal Disease Centers

This directory highlights premier institutions across the United States with specialized programs for diagnosing and managing pediatric inherited retinal diseases (IRDs) such as retinitis pigmentosa, Stargardt disease, Leber congenital amaurosis, and Bardet-Biedl Syndrome. Each listing includes the center’s website and contact information.

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Comprehensive U.S. Directory of Pediatric Retinal Disease Centers
Trust, Transparency, and Our Mission
August 15, 2025
Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness

Have questions about A Race Against Blindness or our fundraiser sweepstakes? This hub page gathers all five articles from our Trust, Transparency, and Our Mission series — covering our story, our legal compliance, our real winners, and how you can verify us.

Blog Series Hub: Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness

Article 1-5 linked here.

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Trust, Transparency, and Our Mission: The Truth About A Race Against Blindness

Latest Posts

Gratitude Gallery December 24, 2025
🧡 Gratitude Gallery: New Reviews & Experiences From Our Community

This Gratitude Gallery shares real reviews and experiences from our community—honest messages of hope, faith, and resilience that remind us why this mission matters.

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Research December 24, 2025
Beacon Therapeutics Treats First Patient in New Gene Therapy Trial for X-Linked Retinitis Pigmentosa

Beacon Therapeutics has treated the first patient in a new clinical trial evaluating bilateral gene therapy for X-linked retinitis pigmentosa. This milestone builds on encouraging earlier data and represents continued momentum in retinal gene therapy research — bringing renewed hope to families affected by inherited retinal diseases.

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Research December 24, 2025
FDA Approves First Gene Therapy for Wiskott-Aldrich Syndrome — A Major Milestone for Rare Disease Treatment

The FDA has approved the first-ever gene therapy for Wiskott-Aldrich syndrome, marking a major milestone for the rare disease community. While this treatment is not for vision loss, it represents important progress for gene therapy as a whole — and brings renewed hope for families awaiting treatments for inherited retinal diseases like BBS and retinitis pigmentosa.

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Research December 24, 2025
Why Patient Advocacy Matters More Than Ever in Rare Disease Gene Therapy

Patient advocacy is now one of the most powerful drivers of progress in retinal gene therapy. Learn how nonprofit involvement, family voices, awareness, and fundraising are accelerating research for Bardet-Biedl Syndrome and inherited retinal diseases — and why this work matters now more than ever.

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