Conquer Chiari

What Conquer Chiari does

Conquer Chiari (legally C&S Patient Education Foundation) is a 501(c)(3) nonprofit organization founded in 2003 and headquartered in Wexford, Pennsylvania. The organization is the largest non-governmental funder of Chiari malformation research globally, with cumulative research grants exceeding $4.1 million since 2004 and 95 peer-reviewed publications generated from its research program as of March 2025. Its primary mission is education, awareness, and research for patients with Chiari malformation and syringomyelia, addressing widespread misdiagnosis, limited provider awareness, and patient isolation.

The organization's core technology and product assets center on a patient education and research ecosystem. These include the Conquer Chiari Library (877+ curated research articles, educational materials, and patient stories), the Chiari Academy (an online learning platform with video-based courses covering Chiari basics, navigation, and research), the Chiari1000 international patient registry hosted at the University of Akron, and the Conquer Chiari Research Center (CCRC), the world's first independent multi-disciplinary Chiari-focused research facility. Distribution is anchored by the annual Conquer Chiari Walk Across America, a grassroots event now spanning 265 cities across 48 states with over 100,000 participants since 2008, supplemented by a physician literature distribution network and an active social media presence across Facebook, TikTok, and YouTube.

Conquer Chiari's revenue model is donation-driven. Income streams include individual charitable donations, walk participation fundraising (with t-shirt incentives at the $50 level), community-organized fundraising events (golf tournaments, concerts, athletic events), book sales (nearly 5,000 copies of 'Conquer Chiari: A Patient's Guide' sold since 2008), and branded merchandise through CafePress. Chiari Academy courses are free with a suggested $10 donation. The organization serves four primary customer segments: Chiari patients, parents and caregivers of pediatric Chiari patients, medical professionals seeking reliable patient education resources, and community supporters who volunteer and fundraise. The organization is led by founder and Executive Director Rick Labuda, a Chiari patient himself, supported by a board that includes research-credentialed directors and a dedicated volunteer/event coordinator.

Name

Conquer Chiari

Legal name

C&S Patient Education Foundation

Website

https://conquerchiari.org

Company type

Private

Founded year

2003

Operating status

Operating

Headcount range

1–10 employees

Short description

Conquer Chiari is a 501(c)(3) nonprofit that funds research, delivers patient education, and builds community for individuals affected by Chiari malformation and syringomyelia. It operates the Chiari1000 patient registry, Chiari Academy online courses, and the annual Walk Across America spanning 48 states.

Ownership category

akta.pro rank

Product category

Neurological Disease Research & Patient Education Nonprofit

NAICS

Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990), Other Individual and Family Services (624190)

SIC

Services-Health Services (8000), Services-Educational Services (8200)

akta.pro primary industry

Corrective Chiropractic & Spinal Decompression (HSADALAE)

akta.pro secondary industry

Pain Management Chiropractic (Neck/Back/Sciatica) (HSADALAI)

Keywords

• Chiari malformation education
• Patient advocacy services
• Neurological disease research
• Health awareness nonprofit
• Medical research funding

Headquarters

HQ city

Wexford

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations: The organization receives tax-deductible charitable donations from individuals supporting Chiari research and awareness. Donations can be directed to general funds or specifically for research.
2. Walk Across America Participation: Fundraising through the annual CCWAA where participants raise money through personal fundraising pages. Incentives include t-shirts for those raising $50+.
3. Community Fundraising Events: Individual and community-organized fundraising events including golf tournaments, benefit concerts, athletic tournaments, and social gatherings. Examples include Carter's Chiari Conquerors Golf Tournament (raised $50,000+ since 2013).
4. Book Sales: Sales of 'Conquer Chiari: A Patient's Guide' in e-book and paperback formats. Nearly 5,000 copies sold worldwide.
5. Merchandise Sales: Sale of Conquer Chiari branded merchandise through CafePress including t-shirts and awareness items.

Pricing tiers

Go-to-market motion2 records

Distribution channels6 records

Marketing channels10 records

Core offering

Conquer Chiari is a 501(c)(3) nonprofit that educates, raises awareness for, and funds research into Chiari malformation and syringomyelia. It delivers free patient education through an online library, a video-based Academy, printable handouts, and a published Patient's Guide; advances research by operating the Chiari1000 patient registry and funding the Conquer Chiari Research Center (CCRC); and builds community through the annual Walk Across America and the Patient Partner certification program.

Product overview

Conquer Chiari (C&S Patient Education Foundation) operates a comprehensive patient education and research ecosystem focused on Chiari malformation and syringomyelia. The core offerings include the Conquer Chiari Library (877+ searchable research articles and educational materials), Chiari Academy (online video-based learning platform with courses like Chiari Bootcamp and Chiari Research), Chiari1000 Project (international patient registry for research), and the Chiari Research Patient Partner Program (certification pathway for patient involvement in research). The organization runs the annual Conquer Chiari Walk Across America fundraising event across multiple U.S. cities, provides printable educational handouts, publishes the Conquer Chiari: A Patient's Guide book, and funds the Conquer Chiari Research Center (CCRC), the world's first independent Chiari-focused research facility.

Differentiator

Problem solved

Functional benefit

Products and services

• Conquer Chiari Library Comprehensive digital library of 877+ searchable research, education, awareness, and personal story entries covering Chiari malformation, syringomyelia, symptoms, diagnosis, and treatment. Available globally in English and Spanish to patients, caregivers, and medical professionals.
• Chiari Academy Online learning platform offering video-based courses (10–15 minute modules with supplemental materials and quizzes) covering Chiari basics, symptoms, diagnosis, treatment, and research. Free to access; suggested $10 donation per course. Provides certification for the Patient Partner Program.
• Chiari1000 Project International patient registry and research initiative collecting comprehensive self-reported data from thousands of Chiari patients worldwide to support scientific research and understanding of Chiari malformation.
• Conquer Chiari Walk Across America (CCWAA) Annual fundraising and awareness event with 265+ local walk sites across 48 US states, plus a Walk Anywhere virtual option. Participants register, receive a personal fundraising page, and earn a t-shirt for raising $50+; participants since 2008 exceed 100,000 and total funds raised exceed $6.6 million.
• Chiari Research Patient Partner Program Certification pathway with Level 1 and Level 2 designations requiring completion of specific Chiari Academy courses and quizzes, preparing patients and caregivers to participate in research governance and projects.
• Conquer Chiari: A Patient's Guide Published patient-focused reference book available in e-book and paperback editions through Amazon, providing accessible explanations of Chiari malformation, diagnosis, and treatment.
• Patient Printable Handouts One-page printable educational PDFs covering Chiari, syringomyelia, symptoms, diagnosis, and surgery for patients and medical professionals; distributed free with a maximum of 25 copies per request.
• Pediatric Chiari Resources Specialized educational materials and resources for pediatric Chiari patients including pediatric handouts, school accommodation guides, and family stories.

Quantifiable outcome

• 95 peer-reviewed publications generated from research program as of March 2025
• +4 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Eight partnerships are on record, tiered core.

• University of Maryland Brain and Tissue BankcoreStrategic or Co-development PartnerConquer Chiari promotes brain donation through the University of Maryland Brain and Tissue Bank for Chiari research. The organization provides a dedicated registration link and guidelines for potential donors, supporting research into Chiari malformation through post-mortem tissue donation.
• Duke UniversitycoreStrategic or Co-development PartnerDuke University researchers, specifically Dr. Allison Ashley-Koch, have presented at Conquer Chiari's A Day of Hope research conferences. Duke is conducting ongoing Chiari genetics research including identifying over 100 families with multiple affected members.
• Northeastern UniversitycoreStrategic or Co-development PartnerDr. Francis Loth, Professor of Bioengineering and Director of Conquer Chiari Research at Northeastern University, presented at A Day of Hope. The university hosts Chiari research activities including quantitative studies on Chiari structure and dynamics.
• University of AkroncoreStrategic or Co-development PartnerThe University of Akron hosts the Conquer Chiari Research Center (CCRC) and the Chiari1000 patient registry database. Dr. Philip Allen serves as Director of the CCRC. The university has been involved in cognitive effects research and neuroimaging studies.
• University of Pittsburgh Medical CentercoreStrategic or Co-development PartnerDr. Robert Friedlander, Chair of Department of Neurological Surgery at UPMC, presented at Conquer Chiari's A Day of Hope conference on preoperative evaluation and management of Chiari malformation.
• Brown UniversitycoreStrategic or Co-development PartnerDr. Petra Klinge, Professor of Neurosurgery at Brown University, presented at A Day of Hope on diagnosis, management, and implications of comorbidities in Chiari malformation.
• Harvard Medical SchoolcoreStrategic or Co-development PartnerDr. Rafeeque Bhadelia, Associate Professor of Radiology at Harvard Medical School, presented at A Day of Hope on headache in Chiari I malformation and real-time CSF flow imaging research.
• Cincinnati Children's HospitalcoreStrategic or Co-development PartnerDr. Jeffrey Greenfield from Children's Hospital of New York/MSKCC Kids presented at A Day of Hope on diagnosis and management of Chiari in children and adolescents.

Scale indicators10 records

Recent moves5 records

Expansion highlights5 records

Broad incumbents

• Hydrocephalus Association: Patient advocacy and research nonprofit for hydrocephalus, which shares CSF-flow and Chiari-related pathophysiology. Comparable to Conquer Chiari in mission scope (education + research funding + community events), target patient demographics (pediatric and adult), and reliance on grassroots fundraisers like walks.
• National Organization for Rare Disorders (NORD): Large umbrella rare-disease advocacy organization covering Chiari among hundreds of conditions. Operates the same patient education/research-funding framework at greater scale, providing a model and competitive context for a single-disease nonprofit like Conquer Chiari.
• Spina Bifida Association: Patient advocacy nonprofit for spina bifida, a structural spinal cord condition with overlapping neurosurgical and pediatric considerations. Mirrors Conquer Chiari's education + research-funding + physician-distribution model for an adjacent spinal condition.
• March of Dimes: Established research and advocacy nonprofit with deep experience funding peer-reviewed research, running national awareness events (March for Babies walks), and distributing patient educational materials. Represents a mature template for the operational playbook Conquer Chiari executes at a smaller scale.
• Muscular Dystrophy Association: Mature nonprofit combining research funding, patient education, and large-scale community engagement (e.g., telethons, walks) for neuromuscular diseases. Provides a benchmark for scale and donor-development trajectory relative to Conquer Chiari's current model.
• National Multiple Sclerosis Society: Major neurological disease advocacy and research funder. Shares the neurological patient-education, research-grant, and community-walk fundraising playbook with Conquer Chiari, but at substantially greater scale across a broader condition.
• American Brain Tumor Association: National brain-related disease nonprofit pursuing research funding, patient education, and awareness. Demonstrates a comparable clinical-research + patient-education + community-event model applied to intracranial pathology.

Direct peers

• Bobby Jones Chiari & Syringomyelia Foundation: Direct condition peer focused on education, awareness, and research for Chiari malformation and syringomyelia. Operates as a fellow 501(c)(3) nonprofit serving the same patient population with parallel educational content and community event programming.
• Chiari & Syringomyelia Foundation: Direct condition peer providing Chiari and syringomyelia awareness, education, and support. Comparable organizational form and donor-supported funding model targeting the same underserved neurological patient population.
• American Syringomyelia & Chiari Alliance Project (ASAP): Direct condition peer for Chiari malformation and syringomyelia patients. ASAP pursues an analogous mission of patient education, awareness, and research support for the same underlying disease area, with comparable community-driven funding model.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/@conquerchiari
• Facebookfacebook.com/conquerchiari
• TikToktiktok.com/@conquerchiari?lang=en
• Xx.com/ConquerChiari
• LinkedInlinkedin.com/company/conquer-chiari

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Subsidiaries2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Conquer Chiari