Fabry Support & Information Group
Supports individuals with Fabry disease through information, advocacy, education, and compassionate care. For fiscal year 2025 it reported $571K in revenue, $554K in expenses, and $749K in net assets.Pt I
- Founded
- 2000
- Type
- Public charity (501(c)(3)) · Diseases & Disorders
- Location
- Concordia, MO
- Website
- www.fabry.org
- Filings
- 6 on file (2020–2025)
More identity details & actions ⌄
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Summary of the Filing
Identity & Classification
Governance & Policies
Officers, Directors & Key Employees
Jack Johnson’s $85K as Founder is at the 69th percentile of top reported officer pay among 901 $100K–1M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 3 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|---|
| Jack Johnson | $85,280 | $83,200 | $80,600 | $72,400 | $60,970 |
| Lisa Bacon | $47,756 | — | — | — | — |
| Debra Johnson | $1,418 | — | — | — | — |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Where the work happens
PATIENT MEETINGS-FSIG brings educational and support meetings directly to Fabry patients and families, many of whom face challenges traveling long distances. These meetings provide up-to-date information from medical and industry professionals and offer opportunities for peer support. In 2025, FSIG hosted meetings in multiple U.S.
EXPERT FABRY CONFERENCE FEFC-FSIG organizes the annual Expert Fabry Conference, offering patients, families, and professionals the opportunity to learn about the latest research and treatment options. In 2025, approximately 113 attendees participated in the conference, which included presentations from leading medical experts.
Website Education
FSIG maintains an online platform that connects Fabry patients and caregivers, providing reliable educational resources and opportunities for peer support. In 2025, the website received 20,815 visits and continued to serve as a trusted source of Fabry-related information.
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Statement of Revenue
Statement of Functional Expenses
Balance Sheet
Financial Metrics
Same NTEE category, revenue band, and state where available. Descriptive — not a grade.
| Metric | This org | Peer median | Percentile |
|---|---|---|---|
| Program ratio | 71% | — | — |
| Overhead ratio | 25% | — | — |
| Fundraising cost ratio | 9% | — | — |
| Revenue growth | -12% | — | — |
Straight from the Form 990 — descriptive, not an evaluation. A ratio is hidden when its base is zero or too small to be meaningful; the dollars are always shown.
Grants
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Filings & Schedule Manifest
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Sources
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