HUNTINGTON'S DISEASE SOCIETY OF AMERICA GROUP

EIN: 900658125 501(c)(3)

NEW YORK, NY

Total Revenue
$3,749,799
Total Expenses
$3,500,605
Total Assets
$866,995
Net Assets
$837,670
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Financial Trends

Organization Details

Formation Year
1986
Legal Domicile
NY
Principal Officer
AMY GRAY
Phone
2122421968
Tax Period
2025-01-01 to 2025-12-31

HUNTINGTON'S DISEASE SOCIETY OF AMERICA GROUP, founded in 1986, is a community nonprofit that reported $3.7M in total revenue in fiscal year 2025. Revenue grew 17% year-over-year, indicating healthy expansion. Expenses of $3.5M left a modest 7% surplus.

Mission

TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH.

Program Service Accomplishments

Program 1
Expenses: $2,714,135

RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE.

Program 2
Expenses: $113,782

COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES.

Program 3
Expenses: $415,116

PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $3,722,802
Program Service Revenue $0
Investment Income $244
Other Revenue $26,753
TOTAL REVENUE $3,749,799

Expense Breakdown

Grants Paid $27,466
Salaries & Benefits $0
Fundraising Expenses $257,297
Program Expenses $3,243,033
Other Expenses $3,473,139
TOTAL EXPENSES $3,500,605

Year-over-Year Comparison

2025 2024 Change
Revenue $3,749,799 $3,205,651 +0.2%
Expenses $3,500,605 $3,477,679 +0.0%
Net Income $249,194 $-272,028 -1.9%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
14
Independent Members
14
Employees
39
Volunteers
500

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
7
$529,102
Total Directors
14
$0
Key Employees
1
$264,632
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
JENNE COLER-DARK CHAIR 3.00
Officer Director
$0 $0 $0
ANGELA ALLEN CHAIR ELECT 3.00
Officer Director
$0 $0 $0
TERESA SRAJER PAST CHAIR 3.00
Officer Director
$0 $0 $0
JAY HUGHES SECRETARY 3.00
Officer Director
$0 $0 $0
CHRISTOPHER DECESARIS TREASURER 3.00
Officer Director
$0 $0 $0
JEFFREY BROWN TRUSTEE 3.00
Director
$0 $0 $0
MARK COE TRUSTEE 3.00
Director
$0 $0 $0
ERIN FURR-STIMMING MD TRUSTEE 3.00
Director
$0 $0 $0
BETH HOFFMAN TRUSTEE 3.00
Director
$0 $0 $0
JONATHAN KLEIN ESQ TRUSTEE 3.00
Director
$0 $0 $0
JAIME HATCHER-MARTIN MD TRUSTEE 3.00
Director
$0 $0 $0
MARA SIFRY TRUSTEE 3.00
Director
$0 $0 $0
AMBER SOUTHWELL PHD TRUSTEE 3.00
Director
$0 $0 $0
DOMINIQUE THOMAS TRUSTEE 3.00
Director
$0 $0 $0
AMY GRAY CHIEF EXECUTIVE OFFICER 3.00
Officer
$333,963 $1,018 $334,981
ROSEMARY COLUCCIO CHIEF OPERATIONS OFF (THRU 6/13/25) 3.00
Officer
$176,343 $17,778 $194,121
ARIK JOHNSON CHIEF MISSION OFFICER 3.00
Key Emp
$237,342 $27,290 $264,632
DEBORAH BOYD REGIONAL DEVELOPMENT DIREC 3.00
Highest
$135,417 $24,253 $159,670
REBECCA CHAN CONTROLLER 3.00
Highest
$156,410 $48,107 $204,517
MYNELLY PEREZ-ORELLANA DIRECTOR, MARKETING & COMM. 3.00
Highest
$123,303 $46,070 $169,373
JESSICA MARSOLEK ASSISTANT DIRECTOR, MISSIO 3.00
Highest
$119,589 $23,390 $142,979
MELINDA JENSEN REGIONAL DEVELOPMENT OFFICER 3.00
Highest
$108,819 $22,206 $131,025
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $3,749,799 $3,500,605 $866,995 $249,194
2024 No data No data No data No data
2023 $3,252,082 $3,044,483 $890,427 $207,599
2022 $3,567,800 $3,671,274 $739,599 $-103,474
2021 $2,867,187 $2,897,324 $785,577 $-30,137
2020 $1,932,226 $2,053,345 $823,490 $-121,119
2019 $3,402,304 $3,565,306 $945,092 $-163,002
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