What The PolG Foundation does

The POLG Foundation is a 501(c)(3) nonprofit research organization founded in 2022 and headquartered in New York City, dedicated to accelerating the discovery of treatments and a cure for POLG mitochondrial disorders, a class of genetic diseases causing progressive multi-organ dysfunction with no approved therapies. The Foundation was established by Julie and Robert de Luxembourg following the 2016 diagnosis of their son Frederik, and is led by CEO Dr. Brian Tseng (M.D., Ph.D., formerly VP at Novartis, AveXis, and Vertex) and CSO Luca Bolliger (Ph.D., formerly of Hoffmann-La Roche). It serves a global POLG patient community of more than 1,000 genetically confirmed individuals, an international network of academic and clinical researchers, and caregivers, with a Scientific Advisory Board chaired by William C. Copeland, the discoverer of the human POLG gene.

The Foundation's core activities are research funding, infrastructure build-out, and ecosystem coordination. It has awarded more than $3.6 million in academic grants to four major projects and operates the POLG Toolbox — a portfolio of patient-derived iPSC cell lines and CRISPR-edited mouse models (PolgR292C and Polg-floxed) distributed worldwide via Jackson Laboratory and MTA agreements. In 2025 it launched the first international prospective POLG Natural History Study, partnered with Emmes/CASIMIR on a digital video assessment platform for clinical trial readiness, and stood up the C4TR-POLG coalition (Newcastle, Tübingen, Bergen) for trial design. The Foundation is engaged with 15+ leading research institutions including the Broad Institute, Institut Imagine, and universities in Helsinki, Bergen, Gothenburg, Padova, Miami, New South Wales, Geneva, CHOP, and UMC Utrecht, and has produced peer-reviewed publications in Nature Communications, Seizure, and Acta Neuropathologica.

The Foundation's revenue model is donations-led: it is funded by tax-deductible contributions from individuals, foundations, and corporations (501(c)(3), EIN 87-1876876), supplemented by merchandise revenue from the MITO clothing line. Its go-to-market is community- and event-driven, including marathons in NYC, Berlin, Paris, and York, triathlons, and cycling challenges, alongside digital engagement (social, newsletter, virtual summits) and presence at major mitochondrial medicine conferences. It does not sell products or services to the patient community and operates with a lean staff of five.

Name

The PolG Foundation

Legal name

The POLG Foundation

Website

https://polgfoundation.org

Company type

Private

Founded year

2022

Operating status

Operating

Headcount range

1–10 employees

Short description

The POLG Foundation is a 501(c)(3) nonprofit research organization that funds, coordinates, and builds research infrastructure to find treatments and a cure for POLG mitochondrial disorders, serving a global community of 1,000+ genetically confirmed patients and an international network of academic and clinical researchers.

Ownership category

akta.pro rank

Product category

Medical Research Foundation

NAICS

Scientific Research and Development Services (5417), Social Advocacy Organizations (8133)

SIC

Services-Commercial Physical & Biological Research (8731), Services-Social Services (8300)

akta.pro primary industry

Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)

akta.pro secondary industry

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)

Keywords

• Rare disease research
• Mitochondrial disorder research
• Biomedical research funding
• Genetic disease research
• Patient advocacy foundation

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: Tax-deductible donations from individuals, foundations, and corporations supporting POLG research. The foundation is a 501(c)(3) nonprofit organization (EIN 87-1876876).
2. MITO Clothing Line: Merchandise sales including t-shirts, baseball caps, beanies, and hoodies featuring POLG awareness designs. All proceeds support POLG Foundation research efforts.
3. Academic Research Grants: Funding from the foundation to academic researchers worldwide for basic science, clinical trial research, and novel therapy development for POLG mitochondrial disorders.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

The POLG Foundation is a 501(c)(3) nonprofit organization that supports and accelerates research to find effective treatments and a cure for POLG mitochondrial disorders. The foundation funds academic research worldwide, develops and distributes research tools (iPSC cell lines and transgenic mouse models) through its POLG Toolbox, builds clinical trial readiness infrastructure, and operates awareness merchandise (the MITO clothing line). It also serves the patient and caregiver community through educational resources, crisis response databases, and international convening.

Product overview

The POLG Foundation operates as a nonprofit research organization rather than a traditional product company. Its offerings include the MITO clothing line (merchandise for awareness and fundraising), the POLG Toolbox (research tools including iPSC cell lines and mouse models for scientists), an educational POLG Film, the POLG Crisis Response Database (medical resource), and CASIMIR Digital Video Assessments (clinical trials tool). The Foundation also funds and coordinates research projects focused on finding treatments and a cure for POLG mitochondrial disorders.

Differentiator

Problem solved

Functional benefit

Brands

• MITO: A clothing line created by Frederik de Nassau featuring t-shirts, baseball caps, beanies, and hoodies to spread awareness about mitochondrial disease. All proceeds go towards The POLG Foundation's research and goal of finding a cure.

Products and services

• MITO Clothing Line Awareness merchandise including t-shirts, baseball caps, beanies, and hoodies designed by Frederik de Nassau featuring POLG awareness designs, sold to individuals with all proceeds supporting POLG Foundation research.
• POLG Toolbox A collection of POLG research resources including iPSC cell lines and transgenic mouse models made available to scientific researchers worldwide to accelerate scientific discovery in POLG-related mitochondrial disorders.
• POLG Crisis Response Database A pooled knowledge resource developed with Children's Hospital of Philadelphia that compiles the latest medical knowledge from experts caring for POLG patients to assist physicians in acute care of patients during mitochondrial crises.
• CASIMIR Digital Video Assessments A clinical trials readiness tool for digital video assessments developed in partnership with Emmes Company (CASIMIR) to enable remote clinical assessment of POLG patients and support clinical trial design.
• Academic Research Grants Program Grant funding awarded to academic researchers worldwide for basic science, clinical trial research, and novel therapy development for POLG mitochondrial disorders in both pediatric and adult patients.
• POLG Natural History Study First ever international prospective POLG Natural History Study launched to enable key clinical data collection for drug development.

Quantifiable outcome

• Funded four major research projects totaling over $3.6 million USD since 2022
• +3 more outcomes

Named customers2 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

Feature5 records

Partnerships

19 partnerships are on record, tiered core and minor.

• Broad Institute of MIT and HarvardcoreStrategic or Co-development PartnerResearch partnership for POLG variant-to-function mapping via deep mutational scanning project led by Dr. Vamsi Mootha, creating a comprehensive resource connecting POLG variants to function for the research and clinical communities.
• The Jackson LaboratorycoreStrategic or Co-development PartnerCollaboration to develop and distribute POLG transgenic mouse models (PolgR292C and Polg-floxed) for use by researchers worldwide studying POLG-related mitochondrial disorders.
• Institut ImaginecoreStrategic or Co-development PartnerLeading European center for genetic diseases research; collaboration on gene therapy development for POLG disease and preclinical validation in mice under the leadership of Dr. Metodi Metodiev and Prof. Arnold Munnich.
• University of Helsinki / Mitochondrial MedicinecoreStrategic or Co-development PartnerTargetPOLG project investigating molecular mechanisms of POLG disease manifestation and progression in brain and liver, testing intervention targets in novel mouse models, led by Prof. Anu Suomalainen Wartiovaara.
• Newcastle UniversitycoreStrategic or Co-development PartnerC4TR-POLG coalition for clinical trial readiness; Wellcome Centre for Mitochondrial Research collaboration on POLG natural history studies and mouse model development; Prof. Doug Turnbull (Emeritus Professor) serves on Scientific Advisory Board.
• University of BergencoreStrategic or Co-development PartnerStem cell-based drug discovery platform for POLG disease using patient-derived iPSCs for neuronal cells and brain organoids, led by Dr. Kristina Xiao Liang.
• University of MiamicoreStrategic or Co-development PartnerEx vivo human mtDNA myopathy model development for therapeutic testing, led by Dr. Carlos Moraes focusing on skeletal muscle mtDNA defects.
• University of New South Wales / NeuRAcoreStrategic or Co-development PartnerPOLG-Driven Parkinson's research creating dopaminergic neurons from patient mutations to investigate mitochondrial dysfunction and identify neuroprotective treatments, led by Prof. Carolyn Sue.
• Children's Hospital of PhiladelphiacoreStrategic or Co-development PartnerPOLG Patients in Crisis project developing crisis response database for acute care; Dr. Amy Goldstein and Dr. Mary Kay Koenig leading knowledge collation and resource creation.
• UMC UtrechtcoreStrategic or Co-development PartnerGenetic repair of POLG-related disease project developing in vivo gene editing platform using prime and base editing technologies to potentially cure POLG mutations, led by Dr. Sabine Fuchs.
• University of GothenburgcoreStrategic or Co-development PartnerMouse model development collaboration with Prof. Maria Falkenberg and Prof. Claes Gustafsson focusing on mitochondrial DNA polymerase POLG and disease-causing mutations.
• Università di PadovacoreStrategic or Co-development PartnerMouse model project collaboration with Prof. Carlo Viscomi and Prof. Massimo Zeviani for POLG disorder mechanistic pathogenesis studies.
• University of GenevacoreStrategic or Co-development PartneriPSC cell line development from POLG patient peripheral blood mononuclear cells, reprogrammed and cryopreserved in Switzerland for global research distribution.
• Lily FoundationcoreStrategic or Co-development PartnerUK's leading mitochondrial disease charity; partnership on systematic review of animal and cell models of POLG disease; collaborative clinical trials readiness initiatives.
• UMDF (United Mitochondrial Disease Foundation)coreStrategic or Co-development PartnerPartnership on Casimir digital video assessment platform for clinical trial readiness; collaborative initiatives in mitochondrial disease advocacy and research.
• Mito Foundation of AustraliacoreStrategic or Co-development PartnerAustralian mitochondrial disease advocacy organization; partnership on clinical trials readiness tools and international research collaboration.
• Columbia UniversityminorStrategic or Co-development PartnerProject Butterfly collaboration studying invaluable post-mortem tissues from POLG families who made courageous donations to advance research.
• CASIMIR (An Emmes Company)coreTechnology or IntegrationDigital Video Assessment platform for remote clinical assessment of POLG patients, supporting clinical trial design and patient monitoring.
• International Mito PatientscoreStrategic or Co-development PartnerInternational network of mitochondrial disease patient organizations; referral partner for patient guidance, education, and support resources.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Mito Foundation of Australia: Australian mitochondrial-disease advocacy and research organization. A direct peer with similar patient-support, research-funding, and clinical-trial-readiness missions; explicit POLG Foundation partner on trial readiness tools and international research collaboration.
• Friedreich's Ataxia Research Alliance (FARA): U.S.-based rare-disease research foundation funding Friedreich's ataxia science, supporting a patient registry, and coordinating clinical-trial readiness. Directly comparable as a single-gene rare-disease research funder with a similar academic/biotech partnership and natural-history-study model.
• The Lily Foundation: UK's leading mitochondrial disease charity, funding research, supporting patients, and advocating for treatments. A direct peer in mission, structure, and patient-advocacy focus, and an explicit POLG Foundation partner on systematic model reviews and clinical trial readiness.
• Parent Project Muscular Dystrophy (PPMD): U.S. patient-led nonprofit funding Duchenne muscular dystrophy research, developing clinical-trial infrastructure, and stewarding patient registries. Closely comparable disease-specific rare-disease foundation model with a similar tool/registry/coalition playbook that POLG Foundation is emulating.
• International Mito Patients (IMP): International network of national mitochondrial-disease patient organizations. Directly comparable as a coordinating patient-advocacy umbrella; serves as POLG Foundation's referral and community partner for patient guidance and education.
• Cure SMA: U.S. disease-specific nonprofit that funded the basic research enabling the first approved SMA gene therapies. Closely comparable as a single-gene rare-disease foundation whose research-grant and clinical-trial-readiness infrastructure was instrumental in bringing disease-modifying therapies to market, mirroring POLG Foundation's strategic intent.

Broad incumbents

• United Mitochondrial Disease Foundation (UMDF): Larger U.S.-based umbrella foundation funding research and advocacy across all mitochondrial diseases. Directly comparable as a mitochondrial-disease research funder and POLG Foundation partner (joint Casimir DVA platform), but serves a broader disease mandate rather than a single-gene focus.
• Muscular Dystrophy Association (MDA): Large U.S. nonprofit funding research and care across neuromuscular diseases including mitochondrial disorders. Comparable as a broader-incumbent rare/neuromuscular disease foundation that historically funds POLG-adjacent science, but with a much wider disease mandate.
• Cystic Fibrosis Foundation: One of the most established rare-disease research foundations, known for funding transformative CF therapeutics and a deep clinical-trial network. Relevant as the gold-standard scale comparable for a single-disease research foundation, though with vastly larger resources and a much broader patient population.

Emerging players

• MitoCanada: Canadian mitochondrial-disease patient organization funding research and supporting families. An emerging-player peer focused on a single national geography and broader mito mandate, with a smaller scale than the POLG Foundation's international footprint.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/polgfoundation
• Facebookfacebook.com/profile.php
• Instagraminstagram.com/polgfoundation
• LinkedInlinkedin.com/company/polgfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles17 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The PolG Foundation