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Filing year 2024

FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA

Schaumburg, Illinois·EIN 36-3320440·NTEE G110 · Diseases, Disorders & Medical Disciplines·501(c)(3)
Total revenue
$15.2M
Total assets
$10.6M
Total expenses
$14M
Reported officers
36
Mission

OUR MISSION IS TO DRIVE RESEARCH FOR TREATMENTS AND A CURE FOR SMA, AND TO SUPPORT AND EMPOWER EVERYONE IMPACTED BY SMA TODAY.

Executive compensation, broken down

Form 990 · Part VII & Schedule J · 9 reported individuals · Filing year 2024

Percentile bands compare each position's total pay with the same role at Diseases, Disorders & Medical Disciplines organizations nationwide.

President
75th to 90th percentilevs Diseases, Disorders & Medical Disciplines peers in Illinois
$349k
$373k
Base
$329k
Bonus
Other
Benefits
$7k
Chief Development Officer
75th to 90th percentile
$295k
$315k
Base
$266k
Bonus
Other
Benefits
$19k
Chief Operating Officer
75th to 90th percentile
$239k
$256k
Base
$209k
Bonus
Other
Benefits
$21k
Chief Medical Officer (through 3/31/25)
Key Employee
Median to 75th percentile
$229k
$245k
Base
$218k
Bonus
Other
Benefits
$1k
Sr Vice President, Communi
Board Vice President
Median to 75th percentile
$202k
$217k
Base
$175k
Bonus
Other
Benefits
$21k
Vice President, Policy
Board Vice President
25th percentile to median
$163k
$175k
Base
$150k
Bonus
Other
Benefits
$8k
Vice President, Clinical Research & Care
Board Vice President
25th percentile to median
$159k
$170k
Base
$138k
Bonus
Other
Benefits
$14k
Vice President of Research
Board Vice President
25th percentile to median
$154k
$165k
Base
$146k
Bonus
Other
Benefits
$1k
Vice President of Development
Board Vice President
25th percentile to median
$145k
$155k

Teal figures restate each filed amount in 2026 dollars.

Estimated with Chicago-Naperville-Elgin, IL-IN-WI metro-area CPI-U, restating filed pay into May 2026 dollars. A restatement of past pay, not current or projected pay.

Plus 27 unpaid individuals.

Browse compensation in Diseases, Disorders & Medical Disciplines

Pay in context

Top pay as a share of expenses

In 2024, the highest total compensation at FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA equaled 2% of the organization's total expenses. The median for diseases, disorders & medical disciplines organizations is 10%.

This organization (2024)
2%
Sector median
10%
Middle half of sector
4% to 22%

Based on 2,393 diseases, disorders & medical disciplines organizations, each measured at its most recent filing year with reported expenses and compensation.

Funded by

Private foundations whose Form 990-PF Part XV grants matched this organization.

Down 3%
from 2023

From $358k in 2023 to $349k in 2024.

$358k
2023
$349k
2024
In today's dollarsEst.
Down 6% in real terms$397k to $373k

Estimated with Chicago-Naperville-Elgin, IL-IN-WI metro-area CPI-U, restating filed pay into May 2026 dollars. A restatement of past pay, not current or projected pay.

Pay for the position

Chief Executive Officer pay fell 3% from 2023 to 2024, while revenue rose 3%.

$358k in 2023 to $349k in 2024.
  • Chief Development Officer pay rose 97% from 2023 to 2024.
  • Chief Operating Officer pay fell 5% from 2023 to 2024.

Pay for the position itself, not any one person. The officeholder may have changed between 2023 and 2024.

Highest reported compensation in each year. Volunteer board members and partial-year payouts are filtered out.

Among peers

Revenue and top compensation, plotted against similar organizations. This organization is highlighted in cyan.

FAQ

Common questions about FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA

What does the Chief Executive Officer of FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA earn?

In 2024, the Chief Executive Officer of FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA received $348,806 in total compensation. This pay is in the top quarter for Chief Executive Officer roles among Diseases, Disorders & Medical Disciplines organizations in Illinois, though not the top 10% of comparable filings. Based on IRS Form 990 data.

How does Chief Executive Officer pay at FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA compare with similar nonprofits?

Compared with the same role at Diseases, Disorders & Medical Disciplines organizations in Illinois, the 2024 pay of the Chief Executive Officer at FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA falls between the 75th and 90th percentiles. In 2024, the highest total compensation at FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA equaled 2% of the organization's total expenses. The median for diseases, disorders & medical disciplines organizations is 10%.

What are FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA's revenue and expenses?

In 2024, FAMILIES OF SPINAL MUSCULAR ATROPHY DBA CURE SMA reported $15.2M in total revenue and $14M in total expenses on its IRS Form 990.

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