Dysautonomia Foundation Inc Dba Familial Dysautonomia Foundation

Nonprofit profile at a glance

EIN
136145280
IRS 990 coverage
2017–2024
Forms available
Form 990 2024
Location
New York, NY, USA
Phone
2122791066
Rating
75
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Nerve, Muscle and Bone Diseases

Official website

Reported finances

Revenue
$1,558,104
Expenses
$2,029,315
Assets
$1,097,266
Liabilities
$263,573

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

16 people listed

Executive titles in this filing

  • FAYE GINSBURG (President)
  • EDWARD BARANOFF (Vice President)
  • LAURENT LANDAU (Vice President)
  • JEFFREY GOLDBERGER (Vice President)
  • STEVEN KIETZ (Vice President)
  • LISA NEWMAN (Vice President)

Highest reported compensation

  • LANIE ETKIND (Executive Dir.): $302,431 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The dysautonomia foundation supports and operates programs focused on the medical care, research, social services, and public education for the benefit of people affected by or at risk for familial dysautonomia fd.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Grant intermediary. The nonprofit sent 75% of its reported program spending out as grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 87
  • Transparency & Controls: 69
  • Accountability: 92
  • Sustainability: 16
  • Growth: 0

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 81.7%; rating input score 82
  • Fundraising efficiency: $9.8 raised per $1 spent on fundraising; rating input score 37; 37th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 94.1%; rating input score 94; 25th percentile among comparable filings
  • Pay-setting controls: 0 of 6 controls in place; rating input score 0
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Missing
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 98.8%; rating input score 99; 47th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 93.8%; rating input score 94; 25th 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: NotApplicable
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -30.2%; rating input score 6; 6th percentile among comparable filings
  • Total-asset coverage ratio: 0.54; rating input score 25; 25th percentile among comparable filings
  • Liabilities to assets ratio: 0.24; rating input score 28; 28th percentile among comparable filings
  • Officer compensation ratio: 14.9%; rating input score 23; 23rd percentile among comparable filings

Growth

  • Program expense growth: -2.3% per year; rating input score 0; 12th percentile among comparable filings
  • Revenue growth: -3.5% per year; rating input score 0; 7th percentile among comparable filings
  • Asset growth: -6.3% per year; rating input score 0; 5th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 81.7% of spending went to programs
  • Governance: 15 of 16 board members independent · 7 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $1.7M in reported program spending
  • Leadership: top reported pay $302K · 16 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 35 of 36 current checks pass · 1 finding to review
  • Schedules: 8 filed schedules · includes major donors, grants, and executive pay
  • Filing history: 7 filing years from 2017 to 2024
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 4 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.
  • 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.

  • High — Transparency & Controls: Pay-setting controls scored 0/100.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 37/100.
  • High — Sustainability: Operating margin scored 6/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • High — Sustainability: Total-asset coverage ratio scored 25/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • High — Growth: Asset growth scored 0/100.
  • High — Sustainability: Officer compensation ratio scored 23/100.
  • High — Sustainability: Liabilities to assets ratio scored 28/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.