What Drake Rayden Foundation does

Drake Rayden Foundation is a 501(c)(3) nonprofit organization (EIN 82-2383660) founded in 2016 by Eric and Tarah O'Sullivan in Simpsonville, South Carolina, after their son Drake was diagnosed with Nonketotic Hyperglycinemia (NKH), an extremely rare metabolic disorder in which approximately 85% of severe cases result in a prognosis measured in days or weeks. The foundation's core mission is to fund and accelerate the development of curative treatments for NKH, with the central technical initiative being an AAV-based gene replacement therapy co-developed since 2019 with the Steven Gray Lab at the University of Texas Southwestern and now advancing toward a 2026 clinical trial, with clinical-grade AAV manufacturing partnered to Andelyn Biosciences. Complementary research tracks include cinnamon-based treatment derivatives prompted by Drake's documented response, which has since engaged three independent research facilities.

The foundation operates a faith-based, community-led model in which revenue is generated entirely through tax-deductible donations, grassroots fundraising campaigns, and events such as the annual HEISENOUGH Event in Spartanburg, SC, rather than through the sale of products or services. Its go-to-market relies on a content-and-narrative engine: an extensive blog (Life with NKH, Research Updates, Give Me Jesus), active social media presence across YouTube, Instagram, Facebook, Twitter/X, LinkedIn, and Pinterest, email newsletters, and a documentary film project (He Is Enough Film). Beneficiary segments are families affected by NKH (primary) and the broader special-needs and faith-based supporter community (secondary); the foundation also functions as a connector between NKH families and researchers. Operational scale is small — described as primarily founder-operated with volunteer support — and the foundation reports no institutional investors, parent company, or commercial revenue streams.

Name

Drake Rayden Foundation

Legal name

Drake Rayden Foundation

Website

https://www.drakeraydenfoundation.com

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

11–50 employees

Short description

Drake Rayden Foundation is a 501(c)(3) nonprofit funding AAV-based gene therapy research for Nonketotic Hyperglycinemia through partnerships with the Steven Gray Lab at UTSW and Andelyn Biosciences, supporting affected families via donations, events, and community-led awareness.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

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

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

Keywords

• Rare disease research
• Patient advocacy services
• Nonprofit fundraising events
• Gene therapy funding
• Special needs support

Headquarters

HQ city

Simpsonville

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Technology or R&D, Marketing or Sales, Personnel, Operations, Others

Revenue model

1. Donations: 501(c)(3) nonprofit organization accepting tax-deductible donations through PayPal and other channels to fund NKH research and family support programs.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

Drake Rayden Foundation is a 501(c)(3) nonprofit organization that funds research and builds partnerships to develop treatments for Nonketotic Hyperglycinemia (NKH), a terminal rare metabolic disorder. The foundation supports a gene replacement therapy research program with the Steven Gray Lab at UTSW, raises awareness and donations through events like HEISENOUGH, and provides community resources for NKH families.

Product overview

Drake Rayden Foundation is a 501(c)(3) non-profit organization focused on raising awareness and funds for Non-Ketotic Hyperglycinemia (NKH) research, providing care for special needs families, and bringing hope through the gospel. The foundation primarily operates through advocacy, fundraising events (such as the HEISENOUGH Event), and partnering with research institutions like the Steven Gray Lab at University of Texas Southwestern for gene therapy development. Their core activities include gene therapy research for NKH treatment, family support resources, and community awareness campaigns.

Differentiator

Problem solved

Functional benefit

Products and services

• NKH Gene Therapy Research Research initiative partnering with the Steven Gray Lab at University of Texas Southwestern to develop gene replacement therapy for Nonketotic Hyperglycinemia, a terminal rare disease.
• HEISENOUGH Event Annual fundraising and awareness event hosted in Spartanburg, SC featuring worship, presentations, and community gathering to support NKH gene therapy research.
• NKH Family Support Resources Blog posts, research updates, and informational resources for families affected by Nonketotic Hyperglycinemia including life updates, medical information, and community connection opportunities.
• He Is Enough Film Documentary film project telling the story of the Drake Rayden Foundation's journey with NKH and faith.
• DRF Open / Drake Rayden Cup Fundraising events and initiatives to support NKH research and family care programs.

Quantifiable outcome

• Founded gene therapy research partnership that has progressed to planned 2026 clinical trial
• +1 more outcomes

Named customers2 records

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Four partnerships are on record, tiered core and minor.

• University of Texas Southwestern - Steven Gray LabcoreStrategic or Co-development Partner · 1 January 2019Two-year partnership initiated in 2019 to create a gene replacement therapy for Non-Ketotic Hyperglycinemia. The foundation partnered with Dr. Steven Gray's lab at UTSW to develop AAV-based gene therapy for this terminal rare disease. This partnership is central to the foundation's mission to find a cure.
• Andelyn BiosciencescoreStrategic or Co-development PartnerAndelyn Biosciences will apply the AAV Curator platform to manufacture clinical-grade AAV for the Drake Rayden Foundation for the treatment of Non-Ketotic Hyperglycinemia. This partnership is for manufacturing the gene therapy for clinical trials.
• Medical University of South Carolina (MUSC)minorStrategic or Co-development PartnerMUSH colleague helped host the SCRDAC Rare Disease Symposium. Tarah O'Sullivan was invited to speak at this rare disease conference hosted in part by MUSC.
• NKH Families and ResearcherscoreOthersFoundation connects NKH families with researchers, shares treatment discoveries (like cinnamon protocol), and facilitates research collaboration across multiple facilities.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Cystic Fibrosis Foundation: The largest US disease-specific research grantmaking foundation, funding a robust therapeutic pipeline for a single rare disease. Directly comparable as a rare-disease grantmaking model that has historically driven gene and modality therapy development from academic labs to clinic.
• National Organization for Rare Disorders (NORD): Umbrella advocacy and research organization for all rare diseases in the US. Comparable as the broader ecosystem hub in which disease-specific foundations like Drake Rayden operate and through which they amplify voice.
• EveryLife Foundation for Rare Diseases: Public policy advocacy foundation serving the broader rare disease community. Comparable as a peer nonprofit operating in the same regulatory and funding advocacy ecosystem.

Direct peers

• Parent Project Muscular Dystrophy: Disease-specific nonprofit funding Duchenne muscular dystrophy research, including gene therapy programs. Highly comparable in mission, structure (parent-founded), and gene therapy grantmaking focus.
• Cure SMA: Spinal muscular atrophy patient organization that helped fund the development of Spinraza and Zolgensma. Directly comparable as a parent-driven rare disease foundation that converted small-scale fundraising into clinical-stage gene therapy assets.
• Foundation for Angelman Syndrome Therapeutics (FAST): Parent-founded rare disease nonprofit actively funding AAV-based gene therapy for Angelman Syndrome. Comparable in being a small, family-driven foundation co-funding academic gene therapy programs toward clinical trials.
• CureDuchenne: Disease-specific nonprofit funding exon-skipping and gene therapy approaches for Duchenne. Comparable in mission, scale envelope, and emphasis on catalyzing academic-to-clinical gene therapy pipelines.
• A Foundation Building Strength: Parent-founded nonprofit funding gene therapy research for Nemaline Myopathy, another ultra-rare genetic disorder. Comparable in family-led origin, small operational footprint, and academic gene therapy grantmaking model.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/DrakeRayden
• Facebookfacebook.com/DrakeRaydenFoundation
• LinkedInlinkedin.com/company/drake-rayden-foundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Drake Rayden Foundation