NATIONAL TAY-SACHS & ALLIED DISEAS… - 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

1957

Legal Domicile

Principal Officer

KATHLEEN M FLYNN

Phone

6172774463

Tax Period

2024-07-01 to 2025-06-30

NATIONAL TAY-SACHS & ALLIED DISEASES ASS, founded in 1957, is a community nonprofit in the Diseases & Disorders sector that reported $1.4M in total revenue in fiscal year 2024.

Mission

NTSAD LEADS THE WORLDWIDE FIGHT TO TREAT AND CURE TAY-SACHS, CANAVAN, GM1, AND SANDHOFF DISEASES BY DRIVING RESEARCH, FORGING COLLABORATIION, AND FOSTERING COMMUNITY, SUPPORTING FAMILIES IS THE CENTER OF EVERYTHING WE DO.

Program Service Accomplishments

Program 1

Expenses: $731,729 Revenue: $0

RESEARCH: MAKES GRANTS TO SCIENTISTS THROUGH A REQUEST FOR PROPOSAL PROCESS. THESE GRANTS ARE FOR RESEARCH PROJECTS THAT INVOLVE BASIC RESEARCH, TRANSLATIONAL STUDIES OR CLINICAL STUDIES IN THE AREAS...

Program 2

Expenses: $434,965

FAMILY SERVICES: PROVIDES SUPPORT TO, AND ADVOCATE FOR, NEWLY DIAGNOSED FAMILIES AND INDIVIDUALS, FAMILIES AND CAREGIVERS ACTIVELY CARING FOR AN AFFECTED LOVED ONE WITH TAY-SACHS, CANAVAN, GM1, OR...

FAMILY SERVICES: PROVIDES SUPPORT TO, AND ADVOCATE FOR, NEWLY DIAGNOSED FAMILIES AND INDIVIDUALS, FAMILIES AND CAREGIVERS ACTIVELY CARING FOR AN AFFECTED LOVED ONE WITH TAY-SACHS, CANAVAN, GM1, OR SANDHOFF DISEASE, AND BEREAVED FAMILIES AND INDIVIDUALS. CONNECT PATIENT COMMUNITY WITH RESEARCHERS AND INDUSTRY PARTNERS. FACILITATE PRIVIATE SOCIAL MEDIA GROUP FOR AFFECTED INDIVIDUALS, FAMILIES AND CAREGIVERS.

Program 3

Expenses: $84,158 Revenue: $311,837

EDUCATION: DEVELOP AND DISSEMINATE RESOURCES ON TAY-SACHS, CANAVAN, GM1, AND SANDHOFF DISEASES TO AFFECTED INDIVIDUALS, FAMILIES, AND CAREGIVERS. RESPOND TO INQUIRIES. HOST AN ANNUAL FAMILY...

EDUCATION: DEVELOP AND DISSEMINATE RESOURCES ON TAY-SACHS, CANAVAN, GM1, AND SANDHOFF DISEASES TO AFFECTED INDIVIDUALS, FAMILIES, AND CAREGIVERS. RESPOND TO INQUIRIES. HOST AN ANNUAL FAMILY CONFERENCE THAT INCLUDES FAMILY INTERACTION, SUPPORT SESSIONS, AND RESEARCH UPDATES BY CLINICIANS, RESEARCHERS, AND INDUSTRY LEADERS, CONSULT WITH MEMBERS OF THE SCIENTIFIC COMMUNITY.

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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 (2024)

Revenue Breakdown

Contributions & Grants $819,762

Program Service Revenue $311,837

Investment Income $65,747

Other Revenue $200,252

TOTAL REVENUE $1,397,598

Expense Breakdown

Grants Paid $0

Salaries & Benefits $506,441

Fundraising Expenses $116,481

Program Expenses $1,250,852

Other Expenses $942,259

TOTAL EXPENSES $1,448,700

Year-over-Year Comparison

	2024	2023	Change
Revenue	$1,397,598	$1,376,815	+0.0%
Expenses	$1,448,700	$1,344,428	+0.1%
Net Income	$-51,102	$32,387	-2.6%

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

N/A

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

Total Directors

Key Employees

Highest Compensated

reported

Name	Title	Hours/Week	Role	Reportable Comp	Other Comp	Total
ORALEA MARQUARDT	DIRECTOR	2.50	Director	$0	$0	$0
SARA SCAPAROTTI	PRESIDENT	2.50	Officer Director	$0	$0	$0
MICHAEL RICHARDS	TREASURER	2.50	Officer Director	$0	$0	$0
LISAJANE ROMER	SECRETARY	2.50	Officer Director	$0	$0	$0
LAUREN CELANO	DIRECTOR	2.50	Director	$0	$0	$0
MATTHEW GOLDSTEIN	DIRECTOR	2.50	Director	$0	$0	$0
GERRY COX	DIRECTOR	2.50	Director	$0	$0	$0
BONNIE DAVIS	DIRECTOR	2.50	Director	$0	$0	$0
AMBER FRANZEN	DIRECTOR	2.50	Director	$0	$0	$0
STACI KALLISH	DIRECTOR	2.50	Director	$0	$0	$0
JONATHAN KATZ	DIRECTOR	2.50	Director	$0	$0	$0
MARTHA KLEINMAN	DIRECTOR	2.50	Director	$0	$0	$0
DAWN LANEY	DIRECTOR	2.50	Director	$0	$0	$0
JONATHAN LAWRENCE	VICE PRESIDENT	2.50	Officer Director	$0	$0	$0
JAMIE RING	DIRECTOR	2.50	Director	$0	$0	$0
SUSAN RODEN	DIRECTOR	2.50	Director	$0	$0	$0
ABBY ROGERS	DIRECTOR	2.50	Director	$0	$0	$0
DEBORAH SANDERS	DIRECTOR	2.50	Director	$0	$0	$0
CARLA STECKMAN	DIRECTOR	2.50	Director	$0	$0	$0
KATHLEEN FLYNN	CEO	40.00	Highest	$169,733	$0	$169,733

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	$1,397,598	$1,448,700	$2,769,718	$-51,102
2024	$1,376,815	$1,344,428	$2,853,352	$32,387
2023	$1,177,492	$1,507,806	$2,868,442	$-330,314
2022	$1,253,108	$770,790	$3,116,145	$482,318
2021	$1,320,048	$748,295	$2,686,792	$571,753
2020	$1,163,793	$676,801	$2,169,529	$486,992
2019	$1,100,075	$907,900	$1,597,631	$192,175
2018	$1,253,531	$899,379	$1,380,185	$354,152

NATIONAL TAY-SACHS & ALLIED DISEASES ASS