Champ1 Research Foundation

What Champ1 Research Foundation does

Champ1 Research Foundation is a 501(c)(3) nonprofit organization founded in May 2018 in Spring Hill, Florida, by Jeff and Katis D'Angelo after their son was diagnosed with CHAMP1, an ultra-rare genetic neurodevelopmental disorder. The foundation serves the global community of approximately 200 documented CHAMP1 patient families (as of 2024), providing family support, education, peer connection, advocacy, and direct outreach to newly diagnosed families. It anchors the CHAMP1 Alliance, a network of affiliated organizations in the United States, United Kingdom (CHAMP1 UK, October 2022), and Europe (CHAMP1 Research Foundation – Europe, January 2023).

The foundation's core operational assets are a research and data infrastructure stack rather than a commercial product. It operates the CHAMP1 Gene Patient Registry, a re-contactable registry with an interactive global map for clinical trial efficiency, and runs a Data Collection Program powered by RARE-X for natural history studies. It maintains a biorepository at the Coriell Institute for Medical Research containing IPSC lines, fibroblasts, LCL, plasma, PBCs, and antibodies, and has co-developed CHAMP1 mouse models (UC Davis KOMP, Jackson Labs) and the first CHAMP1 rat model (University of Edinburgh). It also funds external research, with its first funded project launched at the Children's Hospital of Philadelphia in February 2022 in partnership with Viralgen for gene therapy vectors.

Revenue is generated through small-dollar donations (one-time and recurring monthly via PayPal, Facebook fundraisers, and Givebutter), grants, and a branded merchandise e-commerce store with items priced between approximately $5 and $42. The foundation relies on a volunteer board (all CHAMP1 parents), a Scientific Advisory Board drawn from Columbia University, MUSC, UC Davis, and St. Jude, and an annual Family & Science Conference as its primary community- and fundraising-building mechanism. It is not a commercial entity, has no outside investors, and is governed as a family-led nonprofit.

Name

Champ1 Research Foundation

Legal name

CHAMP1 Research Foundation

Website

https://champ1foundation.org

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

1–10 employees

Short description

Champ1 Research Foundation is a 501(c)(3) nonprofit founded in 2018 that serves approximately 200 families worldwide affected by the ultra-rare genetic disorder CHAMP1. It operates a patient registry, biorepository, animal models, and research funding programs to accelerate treatment development.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Scientific Research and Development Services (5417)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

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

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient registry services
• Biorepository services
• Genetic disorder research
• Family support services

Headquarters

HQ city

Spring Hill

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Technology or R&D, Personnel, Operations, Marketing or Sales, Supply Chain

Revenue model

1. Donations: One-time and monthly cash donations accepted via PayPal, Facebook fundraisers, Givebutter platform, and mail-in checks.
2. Merchandise Sales: Online store selling branded CHAMP1 merchandise including clothing, accessories, and Christmas items. Prices range from approximately $7.50 to $42.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

CHAMP1 Research Foundation is a 501(c)(3) nonprofit that operates a CHAMP1 Patient Registry, a Biorepository through Coriell Institute, and animal models to accelerate research for CHAMP1, an ultra-rare genetic neurodevelopmental disorder. It provides family support, patient advocacy, educational resources, and community-building through annual conferences and digital channels, while distributing research tools and materials to academic researchers and clinicians. The foundation also sells branded merchandise and accepts donations to fund its research and support programs.

Product overview

Champ1 Research Foundation is a patient-led nonprofit organization focused on accelerating research for CHAMP1, an ultra-rare genetic neurodevelopmental disorder. The foundation does not offer a commercial product in the traditional sense, but rather operates a suite of patient registry, data collection, research tools, and community support programs. Core offerings include the CHAMP1 Gene Patient Registry (a detailed, re-contactable registry with clinical trial efficiency mapping), the CHAMP1 Data Collection Program (powered by RARE-X platform), a Biorepository partnership with Coriell Institute for Medical Research, and access to Animal Models (mouse and rat models via MMRRC) and cell lines (IPSC, fibroblasts, LCL, plasma, PBCs). The foundation also maintains a Research Portal, distributes educational resources, hosts an annual CHAMP1 Family & Science Conference, and operates a merchandise store. The organization is not a technology company selling software products.

Differentiator

Problem solved

Functional benefit

Products and services

• CHAMP1 Gene Patient Registry Re-contactable patient registry with detailed phenotype data and an interactive global map enabling clinical trial recruitment for CHAMP1, an ultra-rare genetic neurodevelopmental disorder. Serves researchers and clinicians seeking study participants and serves CHAMP1 families seeking to enroll.
• CHAMP1 Biorepository (via Coriell Institute) Biorepository of patient-derived biological samples including IPSC lines, fibroblasts, LCL, plasma, PBcs, and antibodies for CHAMP1 research, distributed through the Coriell Institute for Medical Research to academic researchers and institutions.
• CHAMP1 Animal Models (Mouse and Rat) CHAMP1 mouse and rat models created at UC Davis KOMP, Jackson Labs, and the University of Edinburgh, available to researchers for CHAMP1 gene and treatment studies.
• CHAMP1 Data Collection Program (RARE-X) Research data collection program powered by RARE-X for natural history studies and aggregated research data on CHAMP1 patients, supporting researchers and clinicians.
• CHAMP1 Store (Branded Merchandise) Online store selling branded CHAMP1 merchandise including T-shirts ($11.21–$32.00), hooded sweatshirts ($20.00–$42.00), bumper stickers ($7.50), mugs ($5.00–$7.00), tumblers ($14.00–$22.00), phone cases ($16.00), and blankets ($15.00–$35.00), with sales supporting foundation programs.

Quantifiable outcome

• Approximately 200 documented CHAMP1 diagnoses worldwide as of 2024
• +3 more outcomes

Named customers4 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

15 partnerships are on record, tiered core and minor.

• Coriell InstitutecoreStrategic or Co-development PartnerPartnership with Coriell Institute for Medical Research to establish and maintain the CHAMP1 Biorepository, storing IPSC lines, fibroblasts, LCL, plasma, PBcs, and antibodies for research purposes.
• Children's Hospital of Philadelphia (CHOP)coreStrategic or Co-development PartnerHosting the 6th Annual Family & Science Conference in September 2026. CHOP researchers collaborate on CHAMP1 research projects including the first funded research project in February 2022 in partnership with Viralgen.
• RARE-XcoreStrategic or Co-development PartnerCollaborative technology platform powering the CHAMP1 Data Collection Program for natural history studies and research data aggregation.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerPartnership with NORD, an organization dedicated to helping the 25-30 million Americans with rare diseases through advocacy, research, and education.
• Global Genes - Rare Foundation AlliancecoreStrategic or Co-development PartnerAlliance partner in the Global Genes Rare Foundation Alliance, a coalition of rare disease foundations working together to support rare disease patients and families.
• CHAMP1 UKcoreStrategic or Co-development PartnerUK-based CHAMP1 organization formed October 2022, gained official UK charity status September 2023. Works alongside the main foundation for UK families and advocacy.
• CHAMP1 Research Foundation - EuropecoreStrategic or Co-development PartnerEuropean affiliate founded January 2023, based in Gonzaga, Italy. Works with existing US and UK organizations as part of the CHAMP1 Alliance.
• Combined BrainminorStrategic or Co-development PartnerConsortium of rare disease foundations collaborating to accelerate development of treatments for rare brain disorders.
• Simons SearchlightminorStrategic or Co-development PartnerCollaborative partnership for natural history research and data sharing in the rare disease research community.
• The Orphan Disease CenterminorStrategic or Co-development PartnerPartnership with the Orphan Disease Center at University of Pennsylvania for rare disease research collaboration.
• Rare Epilepsy Network (REN)minorStrategic or Co-development PartnerNetwork connecting rare epilepsy organizations and researchers to accelerate understanding and treatment of rare epilepsy conditions, many affecting CHAMP1 patients.
• Angel Flight NEminorOthersProvides free air transportation for families who need to travel for medical treatment or research participation.
• Patient Airlift Services (PALS)minorOthersArranges free flights for patients requiring medical treatment, clinical trials, or research participation.
• Patient WorthyminorGTM or Marketing PartnerRare disease patient advocacy platform for raising awareness and amplifying patient voices.
• Rare Revolution MagazineminorGTM or Marketing PartnerDigital magazine focused on rare disease stories and advocacy, providing platform for CHAMP1 awareness.

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Emerging players

• RARE-X: Rare disease patient data collection and sharing platform; powers CHAMP1 RF's data program. Comparable as an enabling technology platform serving the same patient registries and natural history studies.
• Combined Brain: Consortium of rare pediatric brain disorder foundations that pools resources for translational research — CHAMP1 RF is a member, and Combined Brain is a direct comparator in collaborative neurodevelopmental rare disease research.

Broad incumbents

• Global Genes: Rare disease advocacy alliance of which CHAMP1 RF is a member; comparable in mission to support rare disease foundations through education, advocacy, and coalition-building.
• National Organization for Rare Disorders (NORD): Umbrella advocacy and research organization for ~7,000 rare diseases in the US; CHAMP1 RF is a member, and NORD is broadly comparable as a grantmaking/advocacy nonprofit serving rare disease communities.
• Cystic Fibrosis Foundation: Mature single-disease rare disease foundation with extensive research funding, clinical trial network, and therapeutic pipeline partnerships — represents the scaled version of CHAMP1 RF's mission and business model.

Direct peers

• Parent Project Muscular Dystrophy: Patient-founded nonprofit focused on Duchenne muscular dystrophy, operating registries, funding preclinical and clinical research, and partnering with academic centers — directly comparable in mission, structure, and GTM.
• STXBP1 Foundation: Foundation for an ultra-rare neurodevelopmental disorder (STXBP1 encephalopathy) that runs a patient registry, funds research, and operates a scientific advisory board — closely comparable in patient population size and disease scope.
• CureSMA: Single-disease (spinal muscular atrophy) patient-led nonprofit that funds research, maintains patient registries and biorepositories, and drives translational pipelines — the prototypical rare disease foundation model that CHAMP1 RF mirrors.
• FOXG1 Research Foundation: Parent-led foundation for FOXG1 syndrome, an ultra-rare neurodevelopmental disorder; operates a patient registry, biorepository, and research grants — a near-analog in disease category, scale, and operating model.
• ADNP Kids Research Foundation: Foundation focused on ADNP syndrome, another ultra-rare neurodevelopmental disorder; maintains a registry and funds preclinical research, structurally similar to CHAMP1 RF.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/champ1research
• YouTubeyoutube.com/channel/UCul-pIyXEBILsTBIQ8J1_AA
• Facebookfacebook.com/CHAMP1Research
• LinkedInlinkedin.com/company/champ1-research-foundation
• Instagraminstagram.com/champ1research

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Champ1 Research Foundation