HUNTINGTON'S DISEASE SOCIETY OF AM… - Form 990 Financial Data

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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year

1986

Legal Domicile

Principal Officer

AMY GRAY

Phone

2122421968

Tax Period

2025-01-01 to 2025-12-31

HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC, founded in 1986, is a mid-sized nonprofit that reported $11.2M in total revenue in fiscal year 2025. Revenue grew 10% year-over-year, indicating healthy expansion. The organization ran a surplus of $1.8M, a strong 16% operating margin.

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: $1,178,929

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: $3,175,526

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

Program 3

Expenses: $966,495

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

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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

Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $11,378,212

Program Service Revenue $0

Investment Income $278,265

Other Revenue $-423,954

TOTAL REVENUE $11,232,523

Expense Breakdown

Grants Paid $2,298,001

Salaries & Benefits $4,102,983

Fundraising Expenses $1,264,528

Program Expenses $7,394,848

Other Expenses $3,043,924

TOTAL EXPENSES $9,444,908

Year-over-Year Comparison

	2025	2024	Change
Revenue	$11,232,523	$10,174,088	+0.1%
Expenses	$9,444,908	$11,385,673	-0.2%
Net Income	$1,787,615	$-1,211,585	-2.5%

Key Indicators

✓ Grants to Organizations ✗ Grants to Individuals ✓ Lobbying ✗ Political Activity ✓ Foreign Activities ✗ Donor Advised Fund ✓ Schedule B Required

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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

Governance

Voting Members

Independent Members

Employees

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

$529,102

Total Directors

Key Employees

$264,632

Highest Compensated

reported

Name	Title	Hours/Week	Role	Reportable Comp	Other Comp	Total
JENNE COLER-DARK	CHAIR	6.00	Officer Director	$0	$0	$0
ANGELA ALLEN	CHAIR ELECT	6.00	Officer Director	$0	$0	$0
TERESA SRAJER	PAST CHAIR	6.00	Officer Director	$0	$0	$0
JAY HUGHES	SECRETARY	6.00	Officer Director	$0	$0	$0
CHRISTOPHER DECESARIS	TREASURER	6.00	Officer Director	$0	$0	$0
JEFFREY BROWN	TRUSTEE	6.00	Director	$0	$0	$0
MARK COE	TRUSTEE	6.00	Director	$0	$0	$0
ERIN FURR-STIMMING MD	TRUSTEE	6.00	Director	$0	$0	$0
BETH HOFFMAN	TRUSTEE	6.00	Director	$0	$0	$0
JONATHAN KLEIN ESQ	TRUSTEE	6.00	Director	$0	$0	$0
JAIME HATCHER-MARTIN MD	TRUSTEE	6.00	Director	$0	$0	$0
MARA SIFRY	TRUSTEE	6.00	Director	$0	$0	$0
AMBER SOUTHWELL PHD	TRUSTEE	6.00	Director	$0	$0	$0
DOMINIQUE THOMAS	TRUSTEE	6.00	Director	$0	$0	$0
AMY GRAY	CHIEF EXECUTIVE OFFICER	35.00	Officer	$333,963	$1,018	$334,981
ROSEMARY COLUCCIO	CHIEF OPERATIONS OFF (THRU 6/13/25)	35.00	Officer	$176,343	$17,778	$194,121
ARIK JOHNSON	CHIEF MISSION OFFICER	35.00	Key Emp	$237,342	$27,290	$264,632
DEBORAH BOYD	REGIONAL DEVELOPMENT DIRECTOR	35.00	Highest	$135,417	$24,253	$159,670
REBECCA CHAN	CONTROLLER	35.00	Highest	$156,410	$48,107	$204,517
MYNELLY PEREZ-ORELLANA	DIRECTOR, MARKETING & COMMUNICATIONS	35.00	Highest	$123,303	$46,070	$169,373
JESSICA MARSOLEK	ASSISTANT DIRECTOR, MISSION PROGRAMS	35.00	Highest	$119,589	$23,390	$142,979
MELINDA JENSEN	REGIONAL DEVELOPMENT OFF, NE REGION	35.00	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	$11,232,523	$9,444,908	$17,930,550	$1,787,615
2024	No data	No data	No data	No data
2023	$9,833,936	$11,157,448	$18,147,360	$-1,323,512
2022	$10,709,965	$9,418,102	$17,419,711	$1,291,863
2021	$12,200,152	$7,945,111	$15,786,342	$4,255,041
2020	$8,586,946	$8,232,195	$12,188,468	$354,751
2019	$11,017,383	$9,193,170	$10,968,665	$1,824,213
2018	$10,168,000	$8,734,209	$9,438,517	$1,433,791

HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC