Moebius Syndrome Foundation

Nonprofit profile at a glance

EIN
133753992
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Denver, CO, USA
Phone
8446632487
Rating
82
Verdict
STRONG
Rating confidence
Moderate
Sector
Public Foundations

Official website

Reported finances

Revenue
$1,072,751
Expenses
$760,403
Assets
$2,539,041
Liabilities
$105,458

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

Leadership & pay

12 people listed

Executive titles in this filing

  • Rebecca Maher (President)
  • Steven Maldonado (Vice President)
  • Jennifer Whitman (Executive Director)

Highest reported compensation

  • Jennifer Whitman (Executive Director): $95,392 total reported compensation

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

Overview

Mission

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with moebius syndrome and their families, promote greater awareness and understanding of moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of moebius syndrome and its associated conditions.

What it reported doing in 2025

Provide information and support to individuals with Moebius syndrome and their families. The newsletter and biannual conference are the primary means of accomplishing this goal.

Operating model

Revenue model
Donor-supported. 91% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 65% for direct work, and 35% for grants.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and some filed totals do not add up.

Rating breakdown

  • Financial Efficiency: 73
  • Transparency & Controls: 86
  • Accountability: 95
  • Sustainability: 70
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 64.2%; rating input score 64
  • Program expense ratio: 86.8%; rating input score 87
  • Fundraising efficiency: $43.26 raised per $1 spent on fundraising; rating input score 73; 73rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 92.3%; rating input score 92; 18th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 89.5%; rating input score 89; 42nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Fail
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 29.1%; rating input score 81; 81st percentile among comparable filings
  • Total-asset coverage ratio: 3.34; rating input score 77; 77th percentile among comparable filings
  • Liabilities to assets ratio: 0.04; rating input score 45; 45th percentile among comparable filings
  • Officer compensation ratio: 12.5%; rating input score 30; 30th percentile among comparable filings

Growth

  • Program expense growth: 7.7% per year; rating input score 100; 49th percentile among comparable filings
  • Revenue growth: 5.9% per year; rating input score 100; 42nd percentile among comparable filings
  • Asset growth: 7.8% per year; rating input score 100; 47th percentile among comparable filings

Details

  • Where the money goes: 64.2% of revenue deployed · 86.8% of spending went to programs
  • Governance: 11 of 11 board members independent · 7 of 8 filing controls reported
  • Programs: 3 filed program accomplishments · $660K in reported program spending
  • Leadership: top reported pay $95K · 12 people listed
  • Consistency: 28 of 29 current checks pass · 1 finding to review
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 16 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • Related organizations: 2 filed related-organization links
  • 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.

Key Signals

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

  • Review — Accountability: Governance controls: Audit committee oversight not reported.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Moderate — Sustainability: Officer compensation ratio scored 30/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 45/100.