What curing retinal blindness foundation does

Curing Retinal Blindness Foundation (CRBF) is a 501(c)(3) nonprofit organization founded in 2011 by Mike and Kristin Smedley, headquartered in Salem, Ohio, and originating from Bucks County, Pennsylvania. It is the only patient organization specifically dedicated to CRB1 retinal disease, a rare genetic condition causing Leber's Congenital Amaurosis (LCA), Retinitis Pigmentosa (RP), and cone-rod dystrophy, affecting approximately 80,000 people worldwide. The foundation's core mission is to fund research for treatments and cures while connecting affected families to resources for thriving without sight.

CRBF's operational products include a website platform (crb1.org) built by Advanta Advertising, a CRB1 Patient Registry that collects structured data on affected individuals to support research, the "Clearly Seeing Blind" youth-advocate blog, and a main CRBF blog for community updates. It also operates multiple fundraising campaigns — Eye on the Finish Line, Cars for the Cure, Drive the Research, and the Light the Night Cocktails for a Cure signature event — alongside the R.B. EYE September Slam annual softball tournament. Programmatic assets include a Grant Application Program for researchers, resources for raising blind/visually impaired children, and event-hosting tools for community fundraising. The foundation funds five active research projects worldwide and supported the securing of a $1.25 million NIH grant through Dr. Pete Quinn in 2023.

The organization's business model is entirely donation-driven: it raises funds through individual contributions, fundraising events, and partnerships with rare disease organizations (NORD), trade associations (Life Sciences PA), and pharmaceutical companies (Novartis awareness presentation). It does not sell products or services, has no disclosed employees beyond its co-founder/leadership, and has cumulatively raised over $1.4 million since launch. Distribution is global through its website, social media (Instagram), family meetups across the US East Coast, Midwest, and West Coast, and international meetups in Spain and the UK, supplemented by attendance at industry events such as the BIO International Convention.

Name

curing retinal blindness foundation

Legal name

Curing Retinal Blindness Foundation

Website

https://crb1.org

Company type

Private

Founded year

2011

Operating status

Operating

Short description

Curing Retinal Blindness Foundation (CRBF) is a 501(c)(3) nonprofit, founded in 2011 and based in Salem, Ohio, that is the only patient organization dedicated to CRB1 retinal disease (LCA/RP), funding research, maintaining a patient registry, and connecting the ~80,000 affected families globally to support resources.

Ownership category

akta.pro rank

Product category

Nonprofit Disease Advocacy Foundation

NAICS

Research and Development in Biotechnology (except Nanobiotechnology) (541714)

akta.pro primary industry

Specialty Therapeutic-Area CROs (e.g., oncology/rare disease) (HLAGAAAL)

akta.pro secondary industry

Clinical Data Management, Biostatistics & Statistical Programming CROs (HLAGAAAF)

Keywords

• Rare disease research funding
• Retinal disease advocacy
• Patient registry services
• Nonprofit foundation grants
• Blindness support resources

Headquarters

HQ city

Salem

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others, Personnel, Marketing or Sales, Operations

Revenue model

1. Donations and Fundraising: CRBF raises funds through donations, fundraising events, and campaigns. The foundation receives contributions from individual donors, families, and organizations to fund CRB1 retinal disease research projects.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels6 records

Core offering

CRBF is a 501(c)(3) nonprofit foundation that funds scientific research toward treatments and cures for CRB1 retinal disease (Leber's Congenital Amaurosis, Retinitis Pigmentosa, and cone-rod dystrophy). It maintains a CRB1 Patient Registry to support research efforts, connects affected families with resources for thriving with blindness, and runs awareness and fundraising campaigns including Eye on the Finish Line, Cars for the Cure, and Drive the Research.

Product overview

The Curing Retinal Blindness Foundation operates primarily as a non-profit advocacy organization rather than a technology company. Its core offering is a comprehensive website platform that serves as the central hub for its mission to support children and adults blind or visually impaired due to CRB1 retinal disease. The platform includes a CRB1 Patient Registry for connecting patients with research, the Clearly Seeing Blind Blog written by youth patient advocates, and the CRBF Blog for general updates. The foundation also runs multiple fundraising campaigns including Eye on the Finish Line, Cars for the Cure, and Drive the Research, along with event hosting tools for community fundraising activities. Resources for families provide educational materials about assistive technology and living with blindness, while the Grant Application Program supports researchers working on CRB1 treatments.

Differentiator

Problem solved

Functional benefit

Brands

• Clearly Seeing Blind: Blog written by youth patient advocates of the Curing Retinal Blindness Foundation, providing a platform for sharing experiences of living with blindness.
• Eye on the Finish Line Campaign
• Cars for the Cure
• Drive the Research
• Light the Night, Cocktails for a Cure

Products and services

• CRB1 Patient Registry A patient registry that collects and maintains data on individuals affected by CRB1 retinal disease to support research efforts and connect patients with research opportunities and clinical resources.
• Research Grant Program A program offering research grant opportunities for scientists and researchers studying CRB1 retinal disease, funding projects including natural history studies, biomarker development, and gene therapy research for CRB1 mutations.
• Eye on the Finish Line Campaign A fundraising campaign focused on raising awareness and funds to drive CRB1 research toward finding a cure for the disease.
• Drive the Research A fundraising and awareness campaign featuring the Smedley family's story about CRB1 blindness, including awareness videos to drive research funding.
• Cars for the Cure A fundraising initiative within the foundation's campaign portfolio supporting CRB1 research through automobile-related events.
• Family Resources for Living with Blindness Educational and support resources for families affected by CRB1 retinal disease, including tools for the blind and visually impaired, assistive technology guides, and FAQs about CRB1 diagnosis and care.

Quantifiable outcome

• $1.4 million raised for CRB1 research
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core and minor.

• Life Sciences PAcoreStrategic or Co-development Partner · 1 January 2019Life Sciences PA, the only life sciences trade association in Pennsylvania, hosted a pavilion at BIO 2019 where CRBF President Kristin Smedley held meetings and connected with rare disease advocacy colleagues.
• Advanta Advertising, LLCminorImplementation/ SI/ Consulting Partner · 1 January 2019Advanta is identified as the company that created the CRBF website. They are a life sciences branding and marketing company that met with Kristin Smedley at BIO 2019 to discuss spreading the foundation's mission.
• R.B. EYE September SlamminorGTM or Marketing Partner · 1 January 2013Annual softball tournament, auction, and picnic fundraising event created by the Billingsley family in St. Paul, Missouri, benefiting CRBF. Has raised over $110,000.
• Novartis PharmaceuticalcoreStrategic or Co-development PartnerCRBF presented at Novartis Pharmaceutical in Boston to educate about living with blindness. Novartis owns rights to Luxturna (gene therapy for LCA-RPE65) outside the United States. The presentation aimed to build relationships for potential CRB1 research collaboration.
• ShadowBox PicturesminorGTM or Marketing PartnerShadowBox Pictures of Yardley, PA produced an awareness video for CRBF starring the Smedley family, featuring their blind son Michael to raise awareness about CRB1 retinal disease.
• DeAngelo FoundationcoreStrategic or Co-development PartnerThe DeAngelo Foundation is mentioned in connection with Pennsylvania-based doctors and research. The Biggs family connected with CRBF through their local doctor and the DeAngelo Foundation.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerCRBF is planning family meetups in tandem with NORD's annual summit at the Rock and Roll Hall of Fame in Cleveland, Ohio. This partnership provides access to the broader rare disease community.
• Dr. Pete Quinn (Uplifting Athletes)coreStrategic or Co-development PartnerDr. Pete Quinn received the Uplifting Athletes Young Investigator award and has helped secure a $1.25 million NIH grant for CRB1 research.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Choroideremia Research Foundation: The Choroideremia Research Foundation funds research into a rare inherited retinal disorder and provides education, support, and community connections for affected families. It is a direct disease-specific peer to CRBF's CRB1 research-funding and family-support model.
• Usher Syndrome Coalition: The Usher Syndrome Coalition is a patient-led nonprofit advancing research, education, and support for Usher syndrome, a rare genetic condition involving vision and hearing loss. Its patient-community and research-advocacy model closely parallels CRBF's.
• The Vision of Children Foundation: The Vision of Children Foundation funds research and family support for children with genetic vision disorders. It is directly comparable in combining a rare genetic eye-disease mission, research grants, and affected-family support.

Broad incumbents

• Foundation Fighting Blindness: Foundation Fighting Blindness is a larger nonprofit that funds research into inherited retinal diseases and supports patients and families. Its broader retinal-disease portfolio overlaps CRBF's mission and provides a relevant scale and operating-model benchmark.
• Retina International: Retina International is a global umbrella organization representing people with retinal dystrophies and promoting research and access to care. It is comparable as a broader retinal-disease advocacy and research platform.
• Fight for Sight: Fight for Sight is a UK-based charity that funds vision and eye research and mobilizes donors around sight loss. It is a relevant research-funder peer, although it is not focused specifically on CRB1 or operating a patient registry.
• National Organization for Rare Disorders: The National Organization for Rare Disorders is a broad U.S. rare-disease organization that supports patient groups, research, and advocacy. CRBF's relationship and meetup plans with NORD make it an ecosystem-level peer despite its broader disease scope.
• Global Genes: Global Genes is a rare-disease patient advocacy and education organization that connects patients, advocates, and industry. It is a broad ecosystem peer rather than a direct CRB1 competitor.

Regional players

• Fighting Blindness Canada: Fighting Blindness Canada is a Canadian nonprofit supporting people affected by inherited retinal disease and funding vision research. It is a regional peer with similar patient education, advocacy, and research-funding activities.
• Macular Disease Foundation Australia: Macular Disease Foundation Australia is a national patient organization providing macular-disease education, support, and research advocacy. It is a regional peer because it shares a disease-specific eye-support model but serves Australia.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat3 records

Key risks6 records

Key highlights5 records

Customer concentration

• Instagraminstagram.com/oliviahoffman_csb
• LinkedInlinkedin.com/company/curing-retinal-blindness-foundation-crb1-org

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about curing retinal blindness foundation