Familial Dysautonomia Foundation
Legal name: Dysautonomia Foundation Group Return
Nonprofit profile at a glance
- EIN
- 510209328
- IRS 990-EZ coverage
- 2017–2017
- Official website data refreshed
- Sep 2026
- Forms available
- Form 990-EZ 2017
- Location
- New York, NY, USA
- Phone
- 212-279-1066
- Rating confidence
- Limited
- Sector
- Medical Research N.E.C.
Reported finances
- Revenue
- $0
- Expenses
- $3,654
- Assets
- $0
Source: IRS Form 990-EZ. Selected filing: tax year 2017. 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 KIETX (Vice President)
- LISA NEWMAN (Vice President)
People named in this filing
- FAYE GINSBURG (President)
- ALLAN COHEN (Treasurer)
- EDWARD BARANOFF (Vice President)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990-EZ. Selected filing: tax year 2017. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
To raise funds and operate programs to pursue the best possible medical treatment, scientific research, public education and social services for the benefit of those affected with or at risk for familial dysautonomia.
What it reported doing in 2017
Dysautonomia scientific and clinical research projects: basic science research conference, clinical research projects, translational researcg projects and support of clinical research
Operating model
- Revenue model
- Cannot be determined from the filing. The filing does not provide enough consistent revenue detail to tell how this nonprofit funds its work.
- Distribution model
- Cannot be determined from the filing. The filing does not provide enough consistent spending detail to tell whether the nonprofit works directly or through others.
The verdict
- The available evidence is not sufficient to produce an overall rating for this filing. This is not a warning sign.
Rating breakdown
- Financial Efficiency: NotEnoughData
- Transparency & Controls: 82
- Sustainability: 7
- Growth: NotEnoughData
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: Limited
- Program expense ratio: Limited
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 51st percentile among comparable filings
- Major donor itemization: Limited
Sustainability
- Operating margin: Limited
- Total-asset coverage ratio: 0; rating input score 2; 2nd percentile among comparable filings
- Liabilities to assets ratio: Limited
- Officer compensation ratio: 0%; rating input score 56; 56th percentile among comparable filings
Growth
- Program expense growth: Limited
- Revenue growth: Limited
- Asset growth: Limited
Details
- What they do: 3 programs and campaigns described on the official site · 2 operating locations identified
- Where the money goes: Financial trends and filed revenue, expense, asset, and liability detail
- Governance: Filed governance answers
- Accomplishments: 1 filed program accomplishment
- Leadership: top reported pay $0 · 16 people listed
- Consistency: 4 of 4 current checks pass
- Schedules: 2 filed schedules
- Contacts: How to reach this organization
- 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.
- High — Sustainability: Total-asset coverage ratio scored 2/100.
- Review — Sustainability: Officer compensation ratio scored 56/100.