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US nonprofit · EIN 455437249 · East Moriches, NYiSource and licenceOrganisation record IRS Exempt Organizations Business Master File (EIN 455437249) - 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 time served.Latest return IRS Form 990 series e-file data - 990 for the year to 31 December 2024: assets, liabilities, staff, website, telephone, pay, 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. Not a statement that the organisation is recruiting.Exemption status IRS Automatic Revocation of Exemption List (posted to 13 October 2026).Deductibility IRS Publication 78 data (code PC), downloaded 18 October 2026.State registers Colorado Secretary of State (17 October 2026).Licence US Federal Government public domain.How we handle data

Dysautonomia International Inc

Donations deductible
Revenue
$1.1m
year to 31 December 2024
Expenses
$1.2m
year to 31 December 2024
Total assets
$2.7m
$142k liabilities
Net assets
$2.6m
assets less liabilities
Directors and trustees
7
5.3 years on average
Staff
10
300 volunteers
Left since last filing
0
no seats appear to have opened
Officers and senior staff
6
named in Part VII
Exemption reinstated on 15 May 2017. The IRS had automatically revoked it on 15 May 2017 (after three years without a return). Source: IRS Automatic Revocation of Exemption List, posted to 13 October 2026.
How am I connected?

Dysautonomia International Inc's network

7 people1 organisationi7 people and 1 organisation on this map.The large node is the subject of this page. Solid lines are what the register itself records (7). Violet dotted lines (1) 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

7 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.Time served and departures are observed across annual filings. Observed time served is a lower bound - a member may have joined before the first year on record. The organisation reported 7 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.
NameRole as filedSinceOn the board
Amy Kohut JDDirector2020
6 yrs
Irene CollinsDirector2022
4 yrs
Jacqueline Rutter GullyVice President2018
8 yrs
Lauren Stiles ESQ (also filed as Lauren Stiles JD)President & CEO2020
6 yrs
Liza Fisher MBACompany secretary2024
2 yrs
Salvatore Desena MDDirector2024
2 yrs
Shannon KoplitzTreasurer & CFO2020
6 yrs
Under 5 years5 to 6 years6 years or more

Officers and senior leadership

6 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.
NameTitle as filedOn the filings
Christine JagdfeldTreasurer2019
Jacqueline Rutter GullyCompany secretary2019
Jodi ParkerVice Presidentsince 2018
Lauren Stiles ESQPresidentsince 2018
Liza Fisher MBADirector2023
Salvatore Desena MDDirector2023

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
Lauren Stiles JDPresident & CEO70$135k
Amy Kohut JDDirector2$0
Liza Fisher MBASecretary2$0
Jacqueline Rutter GullyVice President10$0
Irene CollinsDirector2$0
Shannon KoplitzTreasurer & CFO10$0
Salvatore Desena MDDirector2$0

Colorado roster

9 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20253035037). 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
Shannon Koplitz
Amy KohutChief Compliance Officer
Irene CollinsBoard Member
Shannon KoplitzTreasurer & CFO
Salvatore DesenaBoard Member
Jacqueline RutterVice President
Lauren StilesPresident & CEO
Lauren StilesPresident/CEO
Liza FisherSecretary

About

Legal name
Dysautonomia International Inc
EIN
455437249
Address
67 Woodlawn Ave, East Moriches, NY, 11940-1535
State
New York
Mission
To increase awareness of Dysautonomia within the medical community and the general public and raise funds for dysautonomia research. (as filed on the Form 990)
Activity (NTEE)
G19 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
2012
Principal officer
Shannon Koplitz (as named on the Form 990)
IRS ruling date
1 June 2018
Status
Code 01 (unconditional exemption)
Form 990 filings on record
5, latest 2024
IRS Publication 78
PC (contributions deductible)

Most connected

Longest observed on the filings

≥8years on the filingsJacqueline Rutter Gully
≥6years on the filingsAmy Kohut JD
≥6years on the filingsLauren Stiles ESQ
≥6years on the filingsShannon Koplitz

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
$2.7m
Total liabilities
$142k
Net assets or fund balances
$2.6m
Contributions and grants received
$874k
Program service revenue
$159k
Grants and similar paid out
$111k
Employees
10
Volunteers
300

Filed finances

1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.
Tax yearTotal revenueTotal expensesSurplus or deficit
2024$1.1m$1.2mDeficit $104k

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
Ann & Robert H Lurie ChildrenDouble blinded placebo controlled$29k
John Hopkin UniverstyNovel Autoantibodies Patients w/POT$27k
Regents of Univ of CALIFORNIAmitochondrial/immune function pots$25k

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 International, 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
22 May 2012
Registered agent
Not stated