The Foundation for Prader-Willi Research

What The Foundation for Prader-Willi Research does

The Foundation for Prader-Willi Research (FPWR) is a 501(c)(3) nonprofit research foundation (federal tax ID 31-1763110) headquartered in Walnut, California, with 11-50 employees and an additional presence in Covina and Los Angeles. Its mission is to eliminate the challenges of Prader-Willi syndrome (PWS), a rare genetic disorder, through research and therapeutic development. FPWR is led by Executive Director Susan Hedstrom (in role since 2009) and Director of Research Programs Dr. Theresa Strong (full-time since 2016), and is governed by an active board with documented founding-era involvement from researchers including Dr. Daniel J. Driscoll and Dr. Merlin G. Butler.

FPWR operates a vertically integrated portfolio of research and clinical infrastructure. Its core assets include the Global PWS Registry (~2,000 participants, 61,795+ surveys), the Clinical Trial Consortium, the PWS-CLIC Clinical Investigation Collaborative, and an iPSC Biobank developed in partnership with CombinedBrain. The foundation issues multi-year research grants (over $2.1M in 2025 and $1M+ across 7 projects in spring 2026) and co-develops clinical and behavioral tools with Vanderbilt University, including the PWS Profile assessment and the BOSS Curriculum. FPWR also coordinates the One Small Step fundraising walk program across 30+ U.S. states (with an international affiliate in FPWR UK) and has partnerships with PWSA | USA, IPWSO, and NORD (Platinum member since 2021).

FPWR's revenue model is multi-channel: individual donations, walk-based grassroots fundraising ($7.5M+ from One Small Step events, $15M+ cumulative since 2010), corporate sponsorships from PWS-focused pharmaceutical companies (Soleno, Harmony, Aardvark, Acadia, Rhythm), and conference revenue. It does not publicly disclose consolidated financials. Its customer base is the PWS community - patients, families, and clinicians - while its commercial counterparties are rare-disease pharma sponsors that rely on the foundation's registry and trial infrastructure for patient recruitment and endpoint validation.

Name

The Foundation for Prader-Willi Research

Legal name

The Foundation for Prader-Willi Research

Website

https://fpwr.org

Company type

Private

Founded year

2003

Operating status

Operating

Headcount range

11–50 employees

Short description

FPWR is a 501(c)(3) nonprofit that funds Prader-Willi syndrome research, operates a global patient registry and clinical trial infrastructure, and runs a national walk fundraising program serving PWS patients, families, clinicians, and rare-disease pharma sponsors.

Ownership category

akta.pro rank

Product category

Rare Disease Research Nonprofit

NAICS

Voluntary Health Organizations (813212), Scientific Research and Development Services (5417), Research and Development in Biotechnology (except Nanobiotechnology) (541714), Research and Development in the Physical, Engineering, and Life Sciences (54171)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

Research & Science Grantmaking Foundations (BPAGAKAI), Research Administration & Grants Management Support (Pre/Post-Award, Compliance) (EDAEALAO)

Keywords

• Rare disease research
• Patient registry platform
• Clinical trial consortium
• Biomedical research grants
• Genetic disorder advocacy

Headquarters

HQ city

Walnut

HQ country

United States

HQ region

North America

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: The organization relies heavily on individual donations from families, supporters, and the general public. The website facilitates donations through Classy.org platform and direct giving options.
2. One Small Step Fundraising Events: Community-led walk events that have collectively raised over $7.5 million to fuel PWS research progress. Events are organized across multiple states with corporate sponsors.
3. Annual Conference Revenue: The organization hosts annual family conferences (October 7-10, 2026 in Philadelphia) that generate revenue through registration and sponsorships.
4. Pharmaceutical & Corporate Sponsorship: Companies like Soleno Therapeutics and Harmony Biosciences sponsor One Small Step events and research initiatives, providing funding support.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels7 records

Core offering

FPWR funds, coordinates, and accelerates biomedical research into Prader-Willi Syndrome through peer-reviewed research grants, a Global PWS Patient Registry, a Clinical Trial Consortium, and an iPSC Biobank. It also develops and disseminates clinical assessment tools (PWS Profile) and behavioral curricula (BOSS) for clinicians and families affected by PWS. The foundation's deliverables are research infrastructure, grant funding, and educational resources rather than commercial products.

Product overview

The Foundation for Prader-Willi Research (FPWR) is a nonprofit organization focused on eliminating the challenges of Prader-Willi syndrome through research advancement and therapeutic development. FPWR does not offer a software product in the traditional sense but provides research infrastructure and programs including: the Global PWS Registry for patient data collection, the Clinical Trial Consortium and PWS-CLIC for conducting clinical research, an iPSC Biobank for stem cell research, a competitive Research Grant Program funding innovative PWS and Schaaf-Yang syndrome studies, the One Small Step fundraising initiative, and the PWS Profile assessment tool. These offerings collectively support the PWS research community through data collection, clinical infrastructure, funding, and educational resources.

Differentiator

Problem solved

Functional benefit

Brands

• One Small Step: Community-led fundraising walk events supporting Prader-Willi syndrome research
• Global PWS Registry
• BOSS Curriculum

Products and services

• Global PWS Registry

Quantifiable outcome

• One Small Step events have raised over $7.5 million for PWS research
• +4 more outcomes

Named customers3 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

Feature3 records

Partnerships

14 partnerships are on record, tiered core, major and minor.

• CombinedBraincoreStrategic or Co-development PartnerPartnership to establish a biorepository for PWS and Schaaf-Yang syndrome research. Biorepositories play a crucial role in rare disease research by collecting, storing, and distributing samples such as tissues, blood, and cells for scientific study.
• PWSA | USAcoreStrategic or Co-development PartnerCollaboration on resources including the BOSS (Building Our Social Skills) online social skills program, made available nationwide through this partnership. Also collaborates on advocacy efforts and FDA engagement for PWS awareness.
• NORD (National Organization for Rare Disorders)majorGTM or Marketing PartnerFPWR holds Platinum membership in NORD. Participates in Rare Disease Week activities and Congressional briefings. NORD hosted briefing highlighting that fewer than 5% of rare diseases have FDA-approved treatments.
• FPWR UKminorChannel Partner/ Reseller/ DistributorInternational partner organization in the UK supporting PWS research and community efforts.
• Colors of HopeminorGTM or Marketing PartnerPartner organization in the PWS advocacy ecosystem, listed as a partner on the FPWR website.
• Autism Brain NetminorStrategic or Co-development PartnerPartner organization supporting brain tissue donation research initiatives for neurodevelopmental disorders including PWS.
• Clinical Trials Transformation Initiative (CTTI)minorStrategic or Co-development PartnerPartner organization working to improve clinical trial quality and efficiency, supporting FPWR's clinical research initiatives.
• Soleno TherapeuticsminorGTM or Marketing PartnerCorporate sponsor of One Small Step fundraising events. Soleno is developing treatments for rare diseases including PWS.
• Harmony BiosciencesminorGTM or Marketing PartnerCorporate sponsor of One Small Step fundraising events. Harmony is conducting the TEMPO clinical trial of pitolisant for excessive daytime sleepiness in PWS.
• Vanderbilt University Medical CentercoreStrategic or Co-development PartnerKey research partner conducting PWS clinical trials including CSTI-500 Phase 2 study. Researchers including Elisabeth Dykens, Elizabeth Roof developed the PWS Profile assessment tool. Study location for multiple clinical trials.
• IPWSO (International Prader-Willi Syndrome Organisation)majorStrategic or Co-development PartnerInternational organization with FPWR Board of Trustees President Tony Holland serving on IPWSO Board. Collaborates on global research and advocacy efforts.
• Aardvark TherapeuticscoreGTM or Marketing PartnerCompany developing ARD-101 for PWS hyperphagia treatment. FPWR supports patient education about the HERO trial and clinical trial recruitment through community engagement.
• Acadia PharmaceuticalscoreGTM or Marketing PartnerCompany developing ACP-101 (carbetocin nasal spray) for PWS hyperphagia. COMPASS PWS Phase 3 study fully enrolled with FPWR community support.
• Rhythm PharmaceuticalscoreGTM or Marketing PartnerCompany developing setmelanotide for PWS. Six-month Phase 2 data presented at ENDO 2026 showing benefits in PWS.

Scale indicators8 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): NORD is the umbrella US rare disease advocacy organization of which FPWR is a Platinum member. NORD provides the broader policy, advocacy, and Rare Disease Week platforms that FPWR leverages, making it a strategic ecosystem peer rather than a direct competitor.
• Muscular Dystrophy Association: The MDA is a long-established nonprofit that funds neuromuscular disease research, runs clinical networks, and operates patient registries across multiple rare diseases. Its combination of grantmaking, clinical care infrastructure, and research funding makes it a broadly comparable model to FPWR's integrated approach.
• ALS Association: The ALS Association is a large disease-focused research foundation that funds grants, advocates for patients, and partners with pharma on therapy development. It is structurally comparable to FPWR as a rare disease research funder, though operating at materially larger scale across a different indication.

Emerging players

• CombinedBrain: CombinedBrain is a nonprofit consortium for rare neurodevelopmental disorders that has partnered with FPWR on the PWS/Schaaf-Yang biorepository. It is an emerging peer operating in adjacent rare disease space with overlapping research infrastructure goals, though broader than PWS alone.

Direct peers

• Parent Project Muscular Dystrophy: Parent Project Muscular Dystrophy is a patient-founded nonprofit that funds Duchenne research, runs patient registries, and operates a venture philanthropy model with pharma partners. It is structurally similar to FPWR in combining grantmaking, registry operations, clinical trial infrastructure, and pharma co-development for a single rare genetic disease.
• International Prader-Willi Syndrome Organisation (IPWSO): IPWSO is the international PWS umbrella organization with cross-board representation from FPWR leadership. It is the global counterpart to FPWR for the same disease, making it a direct peer in mission and patient population, though with a primarily international (non-US) footprint.
• Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation is the gold-standard disease-specific research foundation that pioneered venture philanthropy in rare disease, directly funding drug development that led to multiple approved CF therapies. FPWR's translational programs and venture philanthropy approach explicitly mirror the CFF model, making it the most analogous comparable.
• Angelman Syndrome Foundation: The Angelman Syndrome Foundation is a patient-founded research foundation for another rare neurodevelopmental disorder caused by imprinting defects. It mirrors FPWR in combining family-driven fundraising, a patient registry, research grant funding, and pharma partnerships for gene-therapy and symptom-targeted programs.
• FRAXA Research Foundation: FRAXA is a disease-specific nonprofit that funds research into Fragile X syndrome, a related rare neurodevelopmental disorder. Like FPWR, FRAXA drives a community-led fundraising model, funds academic grants, and partners with pharma on translational programs targeting hyperphagia/cognitive and behavioral symptoms.
• Prader-Willi Syndrome Association (PWSA | USA): PWSA | USA is the sibling PWS patient advocacy organization focused on family support, advocacy, and education, with which FPWR has a formal collaboration including co-distribution of the BOSS curriculum. Both organizations serve the same patient population and frequently co-fund activities, making them the closest peer to FPWR.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks7 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/fpwr

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments6 records

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Frequently asked questions about The Foundation for Prader-Willi Research