Our Research

CRBF: Leading the Worldwide Charge to Cure CRB1 Blindness

Since its founding in 2011, the Curing Retinal Blindness Foundation has led the global charge to find a cure for CRB1-related blindness. At a time when only one research project in the world existed, and it was across the ocean in the Netherlands, CRBF dared to believe in a different future. Through relentless advocacy, strategic funding, and bold collaboration in the science community, we transformed that single effort into a worldwide movement. Today, over 50
CRB1-related research projects are underway around the globe, all driven by the unwavering commitment of CRBF to push for a cure and the support of our incredible community. We are not just a part of the rare eye disease space; we are helping to define it. From legislative breakthroughs to cutting-edge genetic research, every milestone has pushed the boundaries of what is possible. And we’re just getting started.

Milestones that Made History:

• We helped make U.S. history with House Resolution #625—the first piece of legislation ever submitted in Braille—recognizing Inheritable Blindness and Rare Eye Disease Day.
•  Our testimony at the FDA helped pave the way for the approval of Luxturna and sparkeda global study by Retina International, revealing that untreated inherited retinal disease costs the U.S. economy $31.7 billion annually.
• We’ve helped secure major NIH funding for CRB1 research, including critical projects led by Dr. Peter Quinn.
• We have funded and accelerated CRISPR and gene-editing research that is changing the outlook for CRB1-affected families.
• Currently, there are more than 50 research projects related to CRB1 being conducted worldwide!

Full Speed Ahead – Our Progress through Uncertainty:

• We are partnering with Dr. Mariya Moosajee of Moorfields Eye Hospital to launch a CRB1 endpoints/outcomes study focused on young adults—critical for defining what treatment success truly means for our families.
• A CRB1 prospective study is launching in 2025 to track disease progression and support smarter clinical trial design.
• To empower our researchers at Penn Medicine to advance critical CRB1 retinal cell research, we have launched the transformative “Bring the Thunder” campaign to fund the revolutionary Lecia Thunder Microscope. This essential tool will significantly accelerate research progress and enhance the quality of our experimental outcomes.
• We are developing an AI-powered modifier gene program to help researchers understand why one sibling may lose vision while another in the same family does not—insight that could unlock powerful new treatment strategies

In just over a decade, CRBF has helped shape legislation, secure major NIH funding, and accelerate game-changing genetic research for CRB1 blindness. Our work has turned hope into measurable progress, fueling innovative projects across the globe to bring us closer than ever to a cure.

Please read more about our ongoing efforts in the blog entries below!