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Nonprofiteer
← HUNTINGTONS DISEASE SOCIETY OF AMERICA INC

Form 990 for tax year 2025

Filed by HUNTINGTONS DISEASE SOCIETY OF AMERICA INC.

Totals

Total revenue
$11,232,523
Total expenses
$9,444,908
Contributions and grants received
$11,378,212
Grants paid
$2,298,001
Program services expenses (Part IX)
$7,394,848
Management and general expenses
$785,532
Fundraising expenses
$1,264,528
Program service expenses (Part III)
$7,394,848

Program services were 78.3% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Listed in Part VII

  • JENNE COLER-DARK

    CHAIR

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • ANGELA ALLEN

    CHAIR ELECT

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • TERESA SRAJER

    PAST CHAIR

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • JAY HUGHES

    SECRETARY

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • CHRISTOPHER DECESARIS

    TREASURER

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • JEFFREY BROWN

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • MARK COE

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • ERIN FURR-STIMMING MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • BETH HOFFMAN

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • JONATHAN KLEIN ESQ

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • JAIME HATCHER-MARTIN MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • MARA SIFRY

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • AMBER SOUTHWELL PHD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • DOMINIQUE THOMAS

    TRUSTEE

    Total calculated
    $0
    Hours/week
    6 + 3 related

  • AMY GRAY

    CHIEF EXECUTIVE OFFICER

    Total calculated
    $334,981
    From this org
    $333,963
    From related orgs
    $0
    Other
    $1,018
    Hours/week
    35 + 3 related

    Schedule J breakdown matched by us

    Base
    $333,963
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $1,018
    Filer's total
    $334,981

  • ROSEMARY COLUCCIO

    CHIEF OPERATIONS OFF (THRU 6/13/25)

    Total calculated
    $194,121
    From this org
    $176,343
    From related orgs
    $0
    Other
    $17,778
    Hours/week
    35 + 3 related

    Schedule J breakdown matched by us

    Base
    $176,343
    Bonus
    $0
    Other
    $0
    Deferred
    $8,901
    Nontaxable benefits
    $8,877
    Filer's total
    $194,121

  • ARIK JOHNSON

    CHIEF MISSION OFFICER

    Total calculated
    $264,632
    From this org
    $237,342
    From related orgs
    $0
    Other
    $27,290
    Hours/week
    35 + 3 related

    Schedule J breakdown matched by us

    Base
    $216,251
    Bonus
    $21,091
    Other
    $0
    Deferred
    $11,038
    Nontaxable benefits
    $16,252
    Filer's total
    $264,632

  • DEBORAH BOYD

    REGIONAL DEVELOPMENT DIRECTOR

    Total calculated
    $159,670
    From this org
    $135,417
    From related orgs
    $0
    Other
    $24,253
    Hours/week
    35 + 3 related

    Schedule J breakdown matched by us

    Base
    $135,417
    Bonus
    $0
    Other
    $0
    Deferred
    $6,778
    Nontaxable benefits
    $17,475
    Filer's total
    $159,670

  • REBECCA CHAN

    CONTROLLER

    Total calculated
    $204,517
    From this org
    $156,410
    From related orgs
    $0
    Other
    $48,107
    Hours/week
    35 + 3 related

    Schedule J breakdown matched by us

    Base
    $146,410
    Bonus
    $10,000
    Other
    $0
    Deferred
    $7,969
    Nontaxable benefits
    $40,138
    Filer's total
    $204,517

  • MYNELLY PEREZ-ORELLANA

    DIRECTOR, MARKETING & COMMUNICATIONS

    Total calculated
    $169,373
    From this org
    $123,303
    From related orgs
    $0
    Other
    $46,070
    Hours/week
    35 + 3 related

    Schedule J breakdown matched by us

    Base
    $123,303
    Bonus
    $0
    Other
    $0
    Deferred
    $6,882
    Nontaxable benefits
    $39,188
    Filer's total
    $169,373

  • JESSICA MARSOLEK

    ASSISTANT DIRECTOR, MISSION PROGRAMS

    Total calculated
    $142,979
    From this org
    $119,589
    From related orgs
    $0
    Other
    $23,390
    Hours/week
    35 + 3 related

  • MELINDA JENSEN

    REGIONAL DEVELOPMENT OFF, NE REGION

    Total calculated
    $131,025
    From this org
    $108,819
    From related orgs
    $0
    Other
    $22,206
    Hours/week
    35 + 3 related

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Form 990 of other organizations
  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 7 · Other non-fixed payments

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 3
COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION BY THE BOARD.
PART I, LINE 7
THE BOARD OF TRUSTEES APPROVED NONFIXED BONUS PAYMENTS FOR TWO EMPLOYEES DURING 2025.

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

The 10 largest by cash amount. The API serves every itemized grant.

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

Provenance

Return type
form_990
Tax year
2025
Filed
23 June 2026
IRS schema version
2025v4.2
Source object
202631759349300718

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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