- Revenue 2025
- $3,749,799
- Expenses 2025
- $3,500,605
Program services were 92.6% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
As filed
- Subsection
- 03
- Classification
- 1000
- Street
- 505 8TH AVE RM 1402
These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).
Group exemption
A subordinate covered by the group exemption of HUNTINGTONS DISEASE SOCIETY OF AMERICA INC (EIN 13-3349872). matched by us
The IRS lists each organization's group exemption number; we match a subordinate to its central organization by that number and the affiliation code the IRS assigns.
Officers and directors · 2025
As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.
-
JENNE COLER-DARK
CHAIR
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
ANGELA ALLEN
CHAIR ELECT
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
TERESA SRAJER
PAST CHAIR
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
JAY HUGHES
SECRETARY
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
CHRISTOPHER DECESARIS
TREASURER
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
JEFFREY BROWN
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
MARK COE
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
ERIN FURR-STIMMING MD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
BETH HOFFMAN
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
JONATHAN KLEIN ESQ
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
JAIME HATCHER-MARTIN MD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
MARA SIFRY
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
AMBER SOUTHWELL PHD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
DOMINIQUE THOMAS
TRUSTEE
- Total calculated
- $0
- Hours/week
- 3 + 6 related
-
AMY GRAY
CHIEF EXECUTIVE OFFICER
- Total calculated
- $334,981
- From this org
- $333,963
- From related orgs
- $0
- Other
- $1,018
- Hours/week
- 3 + 35 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
- 3 + 35 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
- 3 + 35 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 DIREC
- Total calculated
- $159,670
- From this org
- $135,417
- From related orgs
- $0
- Other
- $24,253
- Hours/week
- 3 + 35 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
- 3 + 35 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 & COMM.
- Total calculated
- $169,373
- From this org
- $123,303
- From related orgs
- $0
- Other
- $46,070
- Hours/week
- 3 + 35 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, MISSIO
- Total calculated
- $142,979
- From this org
- $119,589
- From related orgs
- $0
- Other
- $23,390
- Hours/week
- 3 + 35 related
-
MELINDA JENSEN
REGIONAL DEVELOPMENT OFFICER
- Total calculated
- $131,025
- From this org
- $108,819
- From related orgs
- $0
- Other
- $22,206
- Hours/week
- 3 + 35 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. Earlier years are each on their own filing page.
Filings
-
2025
- Revenue
- $3,749,799
- Expenses
- $3,500,605
- Contributions
- $3,722,802
- Grants paid
- $27,466
-
2024
- Revenue
- $3,205,651
- Expenses
- $3,477,679
- Contributions
- $3,205,417
- Grants paid
- $12,638
-
2023
- Revenue
- $3,252,082
- Expenses
- $3,044,483
- Contributions
- $3,222,635
- Grants paid
- $5,436
-
2022
- Revenue
- $3,567,800
- Expenses
- $3,671,274
- Contributions
- $3,567,726
- Grants paid
- $0
The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.
Grants made
No itemized grants to organizations. Schedule I is filed only by organizations that granted more than $5,000 to a recipient, so most filers have none.
Grants received
-
BNY MELLON CHARITABLE GIFT FUND
$10,000
2024 TO FURTHER THE ORGANIZATION'S EXEMPT PURPOSE
Related organizations
From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.
Declared on its 2025 return
-
HUNTINGTON'S DISEASE SOCIETY OF AMERICA
501(C)(3) · PROG SRVC · NY
Declared as related by
-
HUNTINGTONS DISEASE SOCIETY OF AMERICA INC
On its 2025 return
Other IRS files
Auto-Revocation List
Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.
Publication 78
Not present in the most recent drop.
These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.