Fabry Support & Information Group

Nonprofit profile at a glance

EIN
431890134
IRS 990 coverage
2013–2025
Forms available
Form 990 2025, Form 990-EZ 2010
Location
Concordia, MO, USA
Phone
6604631355
Rating
74
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Birth Defects and Genetic Diseases

Official website

Reported finances

Revenue
$570,712
Expenses
$554,160
Assets
$795,241
Liabilities
$46,404

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

10 people listed

Executive titles in this filing

  • LISA BACON (EXECUTIVE DIRECTOR)
  • AMY YOUNG (PRESIDENT)
  • JASON FRETT (VICE PRESIDENT)

Highest reported compensation

  • JACK JOHNSON (FOUNDER): $85,280 total reported compensation
  • LISA BACON (EXECUTIVE DIRECTOR): $47,756 total reported compensation
  • DEBRA JOHNSON (TREASURER): $1,418 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

See schedule o

What it reported doing in 2025

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. cities, reaching approximately 200 patients and family members.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Direct operator. The filing allocates 92% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 67
  • Transparency & Controls: 83
  • Accountability: 78
  • Sustainability: 40
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 69.6%; rating input score 70
  • Program expense ratio: 71.1%; rating input score 71
  • Fundraising efficiency: $11.11 raised per $1 spent on fundraising; rating input score 38; 38th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 87.5%; rating input score 88; 3rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 70%; rating input score 70; 18th percentile among comparable filings
  • Governance controls: 8 of 9 controls in place; rating input score 89
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Fail
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 2.9%; rating input score 39; 39th percentile among comparable filings
  • Total-asset coverage ratio: 1.44; rating input score 54; 54th percentile among comparable filings
  • Liabilities to assets ratio: 0.06; rating input score 41; 41st percentile among comparable filings
  • Officer compensation ratio: 24.3%; rating input score 12; 12th percentile among comparable filings

Growth

  • Program expense growth: 12% per year; rating input score 100; 64th percentile among comparable filings
  • Revenue growth: 8.7% per year; rating input score 100; 56th percentile among comparable filings
  • Asset growth: 16.2% per year; rating input score 100; 72nd percentile among comparable filings

Details

  • Where the money goes: 69.6% of revenue deployed · 71.1% of spending went to programs
  • Governance: 7 of 10 board members independent · 8 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $394K in reported program spending
  • Leadership: top reported pay $85K · 10 people listed
  • Consistency: 27 of 29 current checks pass · 2 findings to review
  • Schedules: 6 filed schedules · includes major donors
  • Filing history: 12 filing years from 2013 to 2025
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: Filed and resolved organization relationships.
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Moderate — Financial Efficiency: Fundraising efficiency scored 38/100.
  • Moderate — Sustainability: Operating margin scored 39/100.
  • Review — Accountability: Governance controls: Form 990 shared with the board not reported.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Review — Sustainability: Total-asset coverage ratio scored 54/100.
  • High — Sustainability: Officer compensation ratio scored 12/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 41/100.