chiari fund

What chiari fund does

Chiari Fund is a 501(c)(3) nonprofit organization founded in 2013 by Billy "Joey" Rowe and headquartered at 11911 Planters Estates Dr, Charlotte, North Carolina. It provides direct financial assistance to individuals diagnosed with Arnold Chiari Malformation and a defined cluster of related disorders (Tethered Cord Syndrome, Syringomyelia, Ehlers Danlos Syndrome, Craniocervical Instability), covering three use cases: medical bills (doctor and hospital), travel to and from medical appointments, and utility payments (electricity, water, gas). Applicants are onboarded through a phone interview followed by an in-depth application that is voted on by the board before funds are disbursed, with no cap on requested amounts and no repayment obligation. There is no commercial product platform; the only adjacent product is the Chiari Pillow, which is manufactured and sold by partner MedPillow.com and merely cross-promoted by the Fund.

The organization operates as a 100% volunteer entity with no paid staff — the board consists of Founder & President Billy "Joey" Rowe and Secretary Barbara Rowe, with all work performed on a volunteer basis. Revenue derives solely from individual cash donations routed through a PayPal donate button, with the IRS 501(c)(3) designation (Tax ID 46-2933214) and North Carolina state registration making contributions tax-deductible. Marketing is conducted through the Wix-hosted chiarifund.org website and a Facebook page (facebook.com/officialchiarifund), supplemented by word-of-mouth referrals within the small Chiari patient community.

Operationally, Chiari Fund has no technology product, no app, no API, and no digital platform beyond its website; it does not employ AI/ML tools, does not license proprietary technology, and does not hold patents or trademarks. Its sole strategic partner is MedPillow.com, with whom it maintains a mutual cross-promotional relationship. The Fund serves the Southeast United States and has not signaled expansion into additional geographies, product lines, or commercial activities.

Name

chiari fund

Legal name

Chiari Fund

Website

https://chiarifund.org

Company type

Private

Founded year

2013

Operating status

Operating

Short description

Chiari Fund is a 501(c)(3) nonprofit that provides financial assistance for medical bills, travel, and utilities to individuals with Chiari Malformation and related disorders, funded entirely by donations and run by volunteers in Charlotte, North Carolina.

Ownership category

akta.pro rank

Product category

Patient Financial Assistance

NAICS

Social Assistance (624), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300)

akta.pro industry

PRIMARYBPAIAKAE

Income Support & Cash Assistance Programs

Business & Public Services/Public Sector & Government Administration/Social Security, Benefits & Welfare Administration

Keywords

• Patient financial assistance
• Medical bill grants
• Nonprofit health services
• Chiari malformation support
• Rare disease assistance

Headquarters

HQ city

Charlotte

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others

Revenue model

1. Donations: Chiari Fund receives direct cash donations from individuals. As a 501(c)(3) nonprofit, donations are tax-deductible for donors. The organization states that all proceeds go towards providing those who are less fortunate with a path to get the care they need.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels3 records

Core offering

Chiari Fund is a 501(c)(3) nonprofit that provides financial assistance to individuals diagnosed with Arnold Chiari Malformation and related disorders (Tethered Cord Syndrome, Syringomyelia, Ehlers-Danlos Syndrome, Craniocervical Instability). Assistance covers doctor and hospital bills, other medical-related bills, travel to and from medical appointments, and household utilities (electricity, water, gas). The organization is 100% volunteer-run with no compensated staff and considers requests of any size subject to board review.

Product overview

Chiari Fund operates as a single-service nonprofit organization providing financial assistance programs for individuals with Chiari Malformation and related disorders. The organization does not operate a traditional product platform but offers a Financial Assistance Program that pays for medical bills, travel expenses, and utilities for qualified applicants. Additionally, the organization promotes the Chiari Pillow, a specialized medical comfort product developed in partnership with MedPillow.com and neurosurgeons, which is available through their partner's website.

Differentiator

Problem solved

Functional benefit

Products and services

• Financial Assistance Program Volunteer-administered financial aid program that pays approved medical, travel, and household utility expenses for individuals diagnosed with Arnold Chiari Malformation, Tethered Cord Syndrome, Syringomyelia, Ehlers-Danlos Syndrome, Craniocervical Instability, and related disorders. Applicants complete a phone interview and detailed application reviewed by the board.

Named customers1 record

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

One partnership is on record.

• MedPillow.comminorStrategic or Co-development PartnerMedPillow.com is a collaborative partnership between neurosurgeons, Chiari experts, and active members of the World Arnold Chiari Malformation Association (WACMA). Chiari Fund promotes MedPillow.com on its Med Pillow page as a resource for those with Chiari and Related Disorders who have trouble sleeping. The partnership provides informational cross-promotion for the Chiari community.

Scale indicators2 records

Recent moves4 records

Expansion highlights3 records

Direct peers

• Bobby Jones Chiari & Syringomyelia Foundation: A nonprofit dedicated to Chiari Malformation and Syringomyelia — directly overlapping with Chiari Fund's disease focus. Both organizations fund education, research, and patient support for the same patient population.
• Conquer Chiari: A Chiari-focused nonprofit providing education, outreach, and patient support. Closely comparable to Chiari Fund in mission, disease focus, and beneficiary community.
• The Ehlers-Danlos Society: A global nonprofit serving patients with Ehlers-Danlos Syndrome — one of the disorders explicitly supported by Chiari Fund. Strong overlap in patient community and advocacy model.
• World Arnold Chiari Malformation Association (WACMA): An advocacy and support organization specifically for Arnold Chiari Malformation. Already connected to Chiari Fund via the MedPillow partnership, with directly overlapping patient-community focus.

Broad incumbents

• Patient Access Network Foundation (PAN): A large national nonprofit providing financial assistance for out-of-pocket medical costs for underinsured patients with chronic and rare diseases. Comparable financial-assistance model but broader disease scope and far larger scale.
• HealthWell Foundation: A leading nonprofit that helps underinsured patients afford medical treatments across many disease areas. Shares Chiari Fund's medical-financial-assistance model but operates at much greater scale and scope.
• The Assistance Fund: A national nonprofit providing financial assistance for copays, coinsurance, deductibles, and other health-related costs. Directly comparable financial-assistance mission at substantially larger scale.
• Good Days: A national nonprofit offering financial assistance for medical treatments to patients with chronic and rare diseases. Operates a similar direct-to-patient financial-assistance model across a broader disease portfolio.

Regional players

• American Chronic Pain Association: A nonprofit providing support, education, and resources for individuals with chronic pain conditions, which overlap significantly with Chiari symptoms. Comparable community-support model for chronic-illness populations.

Others

• Neurosurgery Outreach Foundation: A nonprofit supporting neurosurgical care and education for underserved populations. Adjacent because Chiari Malformation is treated by neurosurgeons and many Chiari Fund beneficiaries require neurosurgical intervention.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/officialchiarifund

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about chiari fund