FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA (EIN 363320440) - Form 990 Financial Analysis & Trantor Score

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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

1984

Legal Domicile

Principal Officer

KENNETH HOBBY

Phone

8477096318

Tax Period

2023-07-01 to 2024-06-30

FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA, founded in 1984, is a mid-sized nonprofit in the Diseases & Disorders sector that reported $14.8M in total revenue in fiscal year 2023. Revenue grew 8% year-over-year, indicating healthy expansion.

Mission

CURE SMA LEADS THE WAY TO A WORLD WHERE EVERYONE IMPACTED BY SPINAL MUSCULAR ATROPHY (SMA) IS EMPOWERED TO LEAD INDEPENDENT, SUCCESSFUL, AND FULFILLING LIVES. WE STRIVE TO CREATE A COMMUNITY WHERE EVERY INDIVIDUAL IS HEARD AND FEELS WELCOMED. CURE SMA PROVIDES PRACTICAL SUPPORT PROGRAMS FOR OUR COMMUNITY AND ADVOCATES FOR THEIR NEEDS. WE FUND AND DIRECT COMPREHENSIVE RESEARCH THAT DRIVES BREAKTHROUGHS IN TREATMENT, AND WE ADVANCE ACCESS TO HIGH QUALITY CARE. WE WILL NOT STOP UNTIL WE HAVE A CURE.

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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 (2023)

Revenue Breakdown

Contributions & Grants $7,517,231

Program Service Revenue $6,958,513

Investment Income $133,015

Other Revenue $176,476

TOTAL REVENUE $14,785,235

Expense Breakdown

Grants Paid $2,062,306

Salaries & Benefits $5,757,663

Fundraising Expenses $1,874,461

Program Expenses $12,402,067

Other Expenses $7,801,896

TOTAL EXPENSES $15,621,865

Year-over-Year Comparison

	2023	2022	Change
Revenue	$14,785,235	$13,668,775	+0.1%
Expenses	$15,621,865	$14,203,228	+0.1%
Net Income	$-836,630	$-534,453	+0.6%

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

6800

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

$358,071

Total Directors

Key Employees

$551,896

Highest Compensated

reported

Name	Title	Hours/Week	Role	Reportable Comp	Other Comp	Total
ALLYSON HENKEL	DIRECTOR	2.00	Director	$0	$0	$0
AMY MEDINA	DIRECTOR	2.00	Director	$0	$0	$0
BAKRI ELSHEIKH	DIRECTOR	2.00	Director	$0	$0	$0
BRAD NUNEMAKER	TREASURER & VICE CHAIR	5.00	Officer Director	$0	$0	$0
BRIAN SNYDER	DIRECTOR	2.00	Director	$0	$0	$0
BRIANNA GROSS	DIRECTOR (START 1/1/24)	2.00	Director	$0	$0	$0
COREY BRAASTAD	DIRECTOR	2.00	Director	$0	$0	$0
DIANA CASTRO	DIRECTOR	2.00	Director	$0	$0	$0
EDMUND LEE	DIRECTOR	2.00	Director	$0	$0	$0
GILLIAN MULLINS	DIRECTOR	2.00	Director	$0	$0	$0
JACLYN GREENWOOD	DIRECTOR	2.00	Director	$0	$0	$0
JOE WISEMAN	DIRECTOR (START 4/20/24)	2.00	Director	$0	$0	$0
KALEEN ROBINSON	DIRECTOR	2.00	Director	$0	$0	$0
KAREN MCROY-NEGRIN	DIRECTOR (START 1/1/24)	2.00	Director	$0	$0	$0
KELLY JANKOWSKI	DIRECTOR	2.00	Director	$0	$0	$0
MARC GINSKY	DIRECTOR (START 4/20/24)	2.00	Director	$0	$0	$0
MARK MOORE	DIRECTOR (START 4/20/24)	2.00	Director	$0	$0	$0
NICK FARRELL	BOARD CHAIR	5.00	Officer Director	$0	$0	$0
PETER STATILE	DIRECTOR	2.00	Director	$0	$0	$0
ROB LOCKWOOD	DIRECTOR	2.00	Director	$0	$0	$0
ROBERT GRAHAM	DIRECTOR	2.00	Director	$0	$0	$0
SHANNON ZERZAN	DIRECTOR	2.00	Director	$0	$0	$0
SPENCER PERLMAN	DIRECTOR	2.00	Director	$0	$0	$0
TOM MURRAY	DIRECTOR (THROUGH 12/31/23)	2.00	Director	$0	$0	$0
KENNETH HOBBY	PRESIDENT	70.00	Officer	$338,969	$19,102	$358,071
MARLINE PAGAN	CHIEF OPERATING OFFICER	60.00	Key Emp	$223,535	$28,697	$252,232
MARY SCHROTH	CHIEF MEDICAL OFFICER	60.00	Key Emp	$280,222	$19,442	$299,664
AMY THOMASSON	VICE PRESIDENT, MARKETING & COMMUNICATION (THROUGH	50.00	Highest	$147,429	$4,173	$151,602
COLLEEN MCCARTHY O'TOOLE	SR VICE PRESIDENT, COMMUNI	60.00	Highest	$176,138	$26,598	$202,736
JACKIE GLASCOCK	VICE PRESIDENT OF RESEARCH	40.00	Highest	$143,876	$6,919	$150,795
JAMIE GIBSON	CHIEF DEVELOPMENT OFFICER	40.00	Highest	$142,692	$6,953	$149,645
MAYNARD FRIESZ	VICE PRESIDENT, POLICY	50.00	Highest	$145,434	$17,927	$163,361

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	No data	No data	No data	No data
2024	$14,785,235	$15,621,865	$10,703,968	$-836,630
2023	$13,668,775	$14,203,228	$12,713,304	$-534,453
2022	$15,022,219	$14,183,277	$11,297,459	$838,942
2021	$10,416,313	$10,067,637	$10,212,314	$348,676
2020	$12,083,530	$11,119,996	$10,151,974	$963,534
2019	$14,318,987	$14,121,822	$10,376,286	$197,165

FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA