Families of Spinal Muscular Atrophy
Families of Spinal Muscular Atrophy, operating as Cure SMA, is a 501(c)(3) nonprofit organization based in Schaumburg, Illinois (with additional address listed as Elk Grove Village, IL). The organization was established in 1984 and has been tax-exempt since February 1985. It is a mid-sized organization with 53 employees.
Financial Overview
From 2025 IRS Form 990-PF · View filing
Total Assets
$10.6M
-0.5% YoY
Annual Giving
$1.8M
+17.1% YoY
Grant Count
9
-67.9% YoY
Avg Grant Size
$200K
+264.4% YoY
Mission & Focus Areas
Mission Statement: Cure SMA leads the way to a world without spinal muscular atrophy. The organization funds and directs comprehensive research that drives breakthroughs in treatment and care, and provides individuals with SMA and their families the support they need for today.
The organization is dedicated to:
- Funding and advancing a comprehensive research program
- Supporting SMA families through networking, information, and services
- Improving care for all SMA patients
- Educating health professionals and the public about SMA
- Enlisting government support for SMA
- Embracing all touched by SMA in a caring community
Program Areas:
Cure SMA recognizes that individuals with SMA need specialized care and equipment, which can create significant logistical and financial pressure on families. The organization provides:
Care Series Booklets: Developed by medical experts and reviewed by families, these informational materials cover topics including breathing, nutrition, palliative care, genetics, and musculoskeletal issues. Booklets are sent at no cost to anyone who requests them.
Equipment Pool: Families have access to specialized items such as car beds, strollers, and bathing systems at no cost.
Care Packages: Every newly-diagnosed family receives a care package from Cure SMA containing toys and resources appropriate to the child's type of SMA.
Research Funding: The organization funds and directs comprehensive research efforts aimed at developing treatments and a cure for SMA.
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
Fiscal Year 2025 (most recent):
- Total Revenues: $15,213,970
- Total Expenses: $14,019,399
- Total Assets: $10,645,251
- Total Liabilities: $3,220,000
Organization Size: 53 employees
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $10,645,251 | $10,703,968 | $12,713,304 |
| Revenue | $15,213,970 | $14,785,235 | $13,668,775 |
| Expenses | $14,019,399 | $15,621,865 | $14,203,228 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $209,381 | $133,015 | $85,789 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 9 recipients in 2025
Grant Size Distribution
120 grants across all recorded years
Open Grants
2 open opportunities from Families of Spinal Muscular Atrophy
Giving History
Grant recipients and amounts by year
No grants recorded for .
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2025 IRS filing
From 2025 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| ROBERT GRAHAM | DIRECTOR | 2 | — |
| PETER STATILE | DIRECTOR | 2 | — |
| MARK MOORE | DIRECTOR | 2 | — |
| MARC GINSKY | DIRECTOR | 2 | — |
| KAREN MCROY-NEGRIN | DIRECTOR | 2 | — |
| BAKRI ELSHEIKH | DIRECTOR | 2 | — |
| JOE WISEMAN | DIRECTOR | 2 | — |
| ROB LOCKWOOD | DIRECTOR | 2 | — |
| KELLY JANKOWSKI | DIRECTOR | 2 | — |
| AMY MEDINA | DIRECTOR | 2 | — |
| GILLIAN MULLINS | DIRECTOR (THROUGH 12/31/24) | 2 | — |
| EDMUND LEE | DIRECTOR (THROUGH 12/31/24) | 2 | — |
| DIANA CASTRO | DIRECTOR | 2 | — |
| BRIAN SNYDER | DIRECTOR | 2 | — |
| BRIANNA GROSS | DIRECTOR | 2 | — |
| JACLYN GREENWOOD | DIRECTOR | 2 | — |
| COREY BRAASTAD | DIRECTOR | 2 | — |
| ALLYSON HENKEL | DIRECTOR | 2 | — |
| COLLIN POLLOCK | DIRECTOR (START 4/26/25) | 2 | — |
| RACHEL BROWN | DIRECTOR (START 4/26/25) | 2 | — |
| TYLER DUKES | DIRECTOR (START 4/26/25) | 2 | — |
| KALEEN ROBINSON | DIRECTOR | 2 | — |
| SPENCER PERLMAN | DIRECTOR | 2 | — |
| NICK FARRELL | BOARD CHAIR | 5 | — |
| BRADLEY A NUNEMAKER | TREASURER & VICE CHAIR | 5 | — |
| SHANNON ZERZAN | DIRECTOR | 5 | — |
| JOHN WEBER | DIRECTOR (START 10/1/2024) | 2 | — |
| KENNETH HOBBY | PRESIDENT | 70 | $329,195 |
| JAMIE GIBSON | CHIEF DEVELOPMENT OFFICER | 60 | $266,038 |
| MARY SCHROTH | CHIEF MEDICAL OFFICER (THROUGH 3/31/25) | 60 | $218,342 |
| MARLINE PAGAN | CHIEF OPERATING OFFICER | 60 | $208,905 |
| JESSE AYNES | VICE PRESIDENT OF DEVELOPMENT | 50 | $135,299 |
| MARY CURRY | VICE PRESIDENT, CLINICAL RESEARCH & CARE | 50 | $138,474 |
| MAYNARD FRIESZ | VICE PRESIDENT, POLICY | 50 | $149,595 |
| JACKIE GLASCOCK | VICE PRESIDENT OF RESEARCH | 50 | $146,346 |
| COLLEEN MCCARTHY O'TOOLE | SR VICE PRESIDENT, COMMUNI | 60 | $175,435 |
Contact Information
Address: 50 E Commerce Drive, Suite 90, Schaumburg, Illinois 60173
Phone: 800-886-1762
Website: curesma.org
Tax ID (EIN): 36-3320440
Subject Areas
Focus areas based on grantmaking activity
Data last updated April 2026. Sourced from IRS Form 990-PF filings. Research dossier generated April 2026.
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