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US nonprofit · EIN 136145280 · New York, NYiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 136145280) - NTEE activity code, address.Board and officers IRS Form 990 annual filings, Part VII (directors, trustees, officers, key employees), read year by year to observe tenure.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2024: assets, liabilities, staff, website, telephone, pay, related organisations (Schedule R), grants paid (Schedule I).Finances by year IRS Form 990 e-file data - total revenue and total expenses by tax year.Renewal outlook Computed by Governance Register from the observed filing history and filed revenue (us-approach-v4-clean). Not a statement that the organisation is recruiting.Deductibility IRS Publication 78 data (code GROUP), downloaded 18 October 2026.State registers Colorado Secretary of State (17 October 2026).Licence US Federal Government public domain.How we handle data

Dysautonomia Foundation Inc

Revenue
$1.6m
year to 31 December 2024
Expenses
$2m
year to 31 December 2024
Total assets
$1.1m
$264k liabilities
Net assets
$834k
assets less liabilities
Directors and trustees
15
7.3y av
Staff
5
employees, year to 31 December 2024
Left since last filing
0
no seats appear to have opened
Officers and senior staff
1
named in Part VII
How am I connected?

Dysautonomia Foundation Inc's network

15 people3 organisationsi15 people and 3 organisations on this map.The large node is the subject of this page. Solid lines are what the register itself records (15). Violet dotted lines (3) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.

The board

15 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations in the tables. The network map shows same-name matches as likely links only, never as confirmed.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 16 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.
NameRole as filedSinceOn the board
Allan CohenTreasurer2018
8 yrs
Brian StillmanDirector2022
4 yrs
Daniel LandauDirector2022
4 yrs
Edward BaranoffVice President2018
8 yrs
Faye GinsburgPresident2018
8 yrs
Gerald AdlerDirector2018
8 yrs
Gregg MeyersDirector2022
4 yrs
Jeffrey GoldbergerVice President2018
8 yrs
Jennifer SonensheinDirector2018
8 yrs
Laurent LandauVice President2018
8 yrs
Lisa NewmanVice President2018
8 yrs
Paul B WexlerVice President2018
8 yrs
Rebecca SernovitzDirector2023
3 yrs
Steven KietzVice President2018
8 yrs
Steven S FassCompany secretary2018
8 yrs
Under 5 years5 to 6 years6 years or moreShow all 15 →

Officers and senior leadership

1 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.
NameTitle as filedOn the filings
Lanie EtkindExecutive Dir.since 2018

Pay and hours

year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.
NameTitle as filedHours a weekPay from the organisationRelated organisationsOther
Lanie EtkindExecutive Dir.40$267k$36k
Faye GinsburgPresident5$0
Allan CohenTreasurer1$0
Edward BaranoffVice President1$0
Laurent LandauVice President1$0
Jeffrey GoldbergerVice President1$0
Steven KietzVice President1$0
Lisa NewmanVice President1$0
Paul B WexlerVice President1$0
Steven S FassSecretary1$0
Jennifer SonensheinDirector1$0
Gerald AdlerDirector1$0
Gregg MeyersDirector0$0
Daniel LandauDirector0$0
Brian StillmanDirector0$0
Rebecca SernovitzDirector0$0

Colorado roster

19 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20253032306). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.
NameTitle as filed
Lanie EtkindExecutive Director
Brian StillmanDirector
Paul WexlerVice President
Gregg MeyersDirector
Rebecca SernovitzDirector
Allan Cohen
Lisa NewmanVice President
Allan CohenTreasurer
Jennifer SonensheinDirector
Daniel LandauDirector
Faye GinsburgPresident
Steven FassSecretary
Gerald AdlerDirector
Eddie BaranoffVice President
Jeffrey GoldbergerVice President
Albulena PrelvukajDirector of Comm and Fundraising
Julia WinerDevelopment Manager
Laurent LandauVice President
Steve KietzVice President

About

Legal name
Dysautonomia Foundation Inc
EIN
136145280
Address
719 2nd Ave, New York, NY, 10016-2707
State
New York
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. (as filed on the Form 990)
Activity (NTEE)
G50Z Voluntary health associations and medical disciplines
IRS classification
501(c)03 (tax-exempt under section 501(c)(3) where shown)
Classified purpose
Voluntary Health Associations & Medical Disciplines
Size band
6 (IRS master file code)
Formed
1954
Principal officer
Allan Cohen (as named on the Form 990)
IRS ruling date
1 October 1976
Status
Code 01 (unconditional exemption)
Form 990 filings on record
6, latest 2024
IRS Publication 78
GROUP

Most connected

Longest observed on the filings

≥8years on the filingsAllan Cohen
≥8years on the filingsEdward Baranoff
≥8years on the filingsFaye Ginsburg
≥8years on the filingsGerald Adler

Latest return

year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.
Total assets
$1.1m
Total liabilities
$264k
Net assets or fund balances
$834k
Contributions and grants received
$730k
Program service revenue
$0
Grants and similar paid out
$1.2m
Employees
5

Filed finances

1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.
Tax yearTotal revenueTotal expensesSurplus or deficit
2024$1.6m$2mDeficit $471k

As filed on the IRS Form 990. US dollars.

Grants paid

3 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.
RecipientPurposeAmount
Nyu School of MedicineResearch & treatment$1.1m
Autonomic Research LLCResearch & treatment$96k
Montana State UniversityResearch & treatment$20k

State registration

1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.
Dysautonomia Foundation, Inc. likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: New York Department of State, active corporations (data.ny.gov n9v6-gdp6). Licence: New York open data terms of use. Data last fetched 18 October 2026.
State
New York
Entity type
Domestic Not-For-Profit Corporation
Status
Active
Formed
5 August 1954
Registered agent
Not stated