When Kristin Smedley co-founded the Curing Retinal Blindness Foundation (CRBF) in 2011, there was exactly one research project in the world focused on the CRB1 gene — and it was on the verge of shutting down due to lack of funding.
That wasn’t just a statistic. It was a devastating truth for Kristin, whose two sons were both born blind due to mutations in CRB1. There were no treatments. No clinical trials. No roadmap forward.
So she created one.
From Desperation to Determination
Armed with a photo of her boys and a mission in her heart, Kristin reached out to the only known CRB1 researcher in the world — a scientist in the Netherlands who had tried (and failed) to secure funding. She wrote:
“Please don’t stop working on this. We’ll figure out how to fund it.”
That email sparked a movement.
Without any research background or nonprofit connections, Kristin built a community. Families joined. Funds were raised. The Curing Retinal Blindness Foundation was born — and it would soon become a powerful force in rare eye disease research.
From One Project to Over 50
Fast forward 14 years, and CRBF has helped shift CRB1 research from a scientific footnote to a global priority. Today, there are over 50 CRB1-related projects underway around the world, from gene therapy and disease modeling to modifier gene studies and patient-centered outcomes research.
These projects are being driven by institutions including:
- NIH
- Moorfields Eye Hospital (UK)
- Columbia University
- Radboud University (Netherlands)
- The Jackson Laboratory
- Foundation Fighting Blindness
- And more
CRBF was the spark. Now, it’s the engine.
Building a Collaborative Research Culture
One of CRBF’s most important contributions is the CRB1 Research Collaborative, a unique virtual consortium of global experts who meet quarterly to share progress, troubleshoot challenges, and connect across borders and disciplines.
In an industry where researchers are often protective of data and intellectual property, this open collaboration is rare — and incredibly effective. Born out of necessity during the pandemic, the group continues to grow and drive impact.
“We don’t wait for perfect timing,” says Smedley. “We build what’s needed and invite others to run with us.”
Maximizing Every Dollar
With no government funding and no major pharmaceutical sponsor, CRBF has grown through grassroots power, strategic focus, and bold leadership.
What makes CRBF stand out? It turns thousands into millions.
Thanks to early funding from CRBF, a researcher working on CRB1 progressed so significantly he secured a $1.25 million NIH grant — bringing the first-ever CRB1 clinical trial to the edge of reality.
CRBF maximizes every dollar through:
- Strategic partnerships
- Efficient operations and virtual collaboration
- Creative fundraising campaigns like Bike4Sight, Cocktails for the Cure, and Light the Night
CRBF also leverages peer-to-peer fundraising tools and community champions to extend its reach far beyond the traditional nonprofit playbook.
From Here to What’s Next
CRBF isn’t slowing down. With new partnerships like the one with Moorfields Eye Hospital to define meaningful outcomes for patients, and AI-powered studies to unlock modifier gene mysteries, the future is brighter than ever.
What began as one mom’s mission is now a global movement — reshaping research, elevating patient voices, and leading the charge toward treatment, equity, and cure.
Ready to Be Part of the Movement?
- Subscribe to the CRBF newsletter
- Join a fundraiser or start your own
- Support the next generation of research
- Advocate for blindness awareness and access
Together, we’re not just hoping for a cure — we’re building the path to one.
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