What RDH12 Fund for Sight does

The RDH12 Fund for Sight is a registered 501(c)(3) charitable foundation founded in July 2010 by four families whose children were diagnosed with Leber Congenital Amaurosis (LCA) caused by mutations in the RDH12 gene. The foundation's mission is singularly focused on funding research to develop a cure for RDH12-LCA, addressing the gap left by other LCA gene therapies (such as RPE65) that do not address the RDH12 mutation. It serves two primary constituencies: affected families, who gain access to a community, disease information, and fundraising infrastructure across the US and Europe; and academic researchers, who can apply for funding through a formal grant application process to advance RDH12 biology and cure development. The organization has raised nearly $1,000,000 cumulatively and has awarded more than $500,000 in research grants, including a 2014 award to Dr. Debra Thompson at the University of Michigan for gene therapy research.

The foundation is entirely volunteer-operated, with no paid employees and no administration fees. Governance is held by a board composed exclusively of parents of affected children: President Jennifer Pletcher, Vice President Michelle Olsen, Treasurer Ginny Pryor, Secretary Spenta Hormozdyaran, and board members Lori Kinney, Mathew Pletcher, and Michael Fiore. The revenue model is donations and philanthropic fundraising only — no products or services are sold. Donations are accepted via direct mail (PO Box 161481, Boiling Springs, SC), electronic platforms (Dwolla for bank transfers, Amazon Payments for credit cards), and through GoodSearch's search-and-shop donation portal, with European contributions facilitated through partner organization A Candle in the Dark. Localized fundraising is driven by affiliated family groups including Abigail's Angels, Bella's Buddies, and Finley Fighters, creating a distributed community-led go-to-market motion. As a federally registered 501(c)(3), all donations are tax-deductible and eligible for corporate matching programs.

Name

RDH12 Fund for Sight

Legal name

The RDH12 Fund for Sight

Website

https://rdh12.org

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

51–100 employees

Short description

The RDH12 Fund for Sight is a volunteer-run 501(c)(3) charitable foundation that funds research for a cure for Leber Congenital Amaurosis caused by RDH12 gene mutations, serving affected families in the US and Europe and academic researchers.

Ownership category

akta.pro rank

Product category

Charitable Foundation for Rare Disease Research

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

Research & Science Grantmaking Foundations (BPAGAKAI), Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease research funding
• Charitable foundation grants
• RDH12 LCA cure research
• Gene therapy funding
• Volunteer nonprofit foundation

Headquarters

HQ city

Boiling Springs

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others, Operations

Revenue model

1. Donations and Fundraising: The organization raises funds through direct donations (check or electronic), annual giving programs, fundraising events, and partnerships with platforms like GoodSearch and Dwolla. The fund has raised nearly $1,000,000 to support the cure.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels5 records

Core offering

The RDH12 Fund for Sight is a 501(c)(3) charitable foundation that raises tax-deductible donations and awards research grants to scientists working on treatments and a cure for RDH12-LCA (Leber Congenital Amaurosis caused by RDH12 gene mutations). It also connects affected families, distributes information about the disease, and supports grassroots fundraising through local family-based groups in the US and Europe.

Product overview

The RDH12 Fund for Sight is a 501(c)(3) charitable foundation with a single-minded focus on funding research to develop a cure for RDH12-LCA (Leber Congenital Amaurosis caused by RDH12 gene mutations). The organization operates as a family-driven volunteer effort, offering research grant funding to scientists, community support for affected families, and educational resources about the disease. The core service is the Research Grant Program, which has awarded over $500,000 to support gene therapy development and other treatment research. Supporting offerings include family community building and information distribution to raise awareness about the condition.

Differentiator

Problem solved

Functional benefit

Products and services

• Research Grant Program

Quantifiable outcome

• Nearly $1,000,000 raised for RDH12-LCA research
• +1 more outcomes

Named customers5 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration3 records

Partnerships

Five partnerships are on record, tiered minor.

• Abigail's AngelsminorGTM or Marketing Partner · 1 January 2010Family fundraising group partner that works with the RDH12 Fund for Sight to raise awareness and funds for RDH12-LCA research. Listed as a partner organization on the fund's website.
• A Candle in the DarkminorGTM or Marketing Partner · 1 January 2010European partner organization that accepts donations from European supporters on behalf of the RDH12 Fund for Sight. Helps facilitate international fundraising and awareness efforts.
• Bella's BuddiesminorGTM or Marketing Partner · 1 January 2010Family fundraising group partner that supports the mission of the RDH12 Fund for Sight through local awareness and fundraising activities.
• Finley FightersminorGTM or Marketing Partner · 1 January 2010Family fundraising group partner that works alongside the RDH12 Fund for Sight to support research and raise awareness for RDH12-LCA.
• GoodSearchminorGTM or Marketing PartnerOnline search engine and shopping portal registered with the RDH12 Fund for Sight. Every search generates money for the fund, and online purchases through partner retailers like Amazon and Vistaprint result in additional donations.

Scale indicators2 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• Global Genes: Large rare-disease advocacy and support organization that provides resources and infrastructure to small, disease-specific foundations like RDH12 Fund for Sight.
• EveryLife Foundation for Rare Diseases: Policy and advocacy nonprofit representing the rare disease community. Indirect peer as a broader umbrella that influences the funding environment for small RCA/RDH12-specific foundations.
• Foundation Fighting Blindness: The largest US nonprofit funding retinal disease research, including LCA. Highly relevant as a broad incumbent that competes for the same donor dollars and researchers, though it covers many conditions beyond RDH12 alone.

Regional players

• Aim for the Heart (Atherogenic LCA foundations): Smaller rare-disease cardiovascular foundation. Comparable as a small, family-driven, volunteer-run grantmaking foundation, though different therapeutic area.

Direct peers

• Eye On Vision Foundation: Foundation supporting research into Leber Congenital Amaurosis and other inherited retinal diseases. Direct peer in disease scope and parent-led grantmaking model.
• Curing Retinal Blindness Foundation: Small, family-driven foundation focused specifically on funding CRB1-related retinal disease research. Direct structural analog to RDH12 Fund for Sight in mission, governance, and scale.
• Sofia Sees Hope: Family-founded nonprofit dedicated to LCA and inherited retinal disease research and family support. Direct peer in disease focus, community-driven model, and grant funding role.

Others

• CRISPR Therapeutics (RDH12 academic partnerships): While not a peer nonprofit, CRISPR-based gene editing programs for RDH12 mutations represent the eventual therapeutic avenue the foundation is funding toward, making it thematically relevant.
• ProQR Therapeutics (Sepofarsen/LCA programs): Clinical-stage RNA therapy company that has worked on LCA programs (CEP290). Thematically relevant as a therapeutic developer that disease-specific foundations like RDH12 Fund for Sight support or compete with for visibility.

Emerging players

• Lawrence Foundation (Rare Disease): Smaller family-run grantmaking entity that funds niche research. Comparable structural model though broader disease scope.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat3 records

Key risks6 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/pages/Abigails-Angels-Rdh12-Fund-For-Sight/192106824151943?sk=wall

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about RDH12 Fund for Sight