Spinal Muscular Atrophy Foundation is a private foundation focused on Education, based in JACKSON, WY. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $50.2M in total assets. In 2024, it awarded 11 grants totaling $1.5M. Net investment income was $19.5M.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$50.2M
+48.9% YoY
Annual Giving
$1.5M
+29.1% YoY
Grant Count
11
+22.2% YoY
Avg Grant Size
$136K
+5.6% YoY
Under IRS private-foundation payout rules, Spinal Muscular Atrophy Foundation reported a distributable amount of $1.9M for 2024 — the minimum it must pay out in qualifying distributions.
About Spinal Muscular Atrophy Foundation
Based on IRS filings
Spinal Muscular Atrophy Foundation is a private foundation focused on Education, based in JACKSON, WY. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $50.2M in total assets. In 2024, it awarded 11 grants totaling $1.5M. Net investment income was $19.5M.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $50,173,258 | $33,691,989 | $24,079,888 |
| Revenue | $19,527,538 | $12,507,750 | $25,419,539 |
| Expenses | $4,733,792 | $3,641,528 | $4,039,863 |
| Qualifying Distributions | $2,774,807 | $2,548,145 | $2,294,074 |
| Net Investment Income | $19,480,858 | $12,455,336 | $24,586,127 |
| Distributable Amount | $1,929,477 | $1,163,457 | $138,664 |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
Grant Size Distribution
29 grants across all recorded years
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include John Hopkins University ($238,814), Swiss Federal Technology Institute of Lausanne ($218,006), Stanford University ($207,000).
| Recipient | Purpose | Amount |
|---|---|---|
| STANFORD UNIVERSITY PALO ALTO, CA | OVERSIGHT ON THE STANFORD-SMA FOUNDATION REGENERATIVE MEDICINE PROGRAM PROJECTS | $167,825 |
| STANFORD UNIVERSITY PALO ALTO, CA | DEVELOPMENT OF NONINVASIVE GENE EDITING METHODS | $33,460 |
| STANFORD UNIVERSITY PALO ALTO, CA | CHARACTERIZATION OF MUSCLE IN SMA PATIENTS | $69,000 |
| STANFORD UNIVERSITY PALO ALTO, CA | GENERATION OF SPINAL CORD MOTOR NEURONS FROM PLURIPOTENT CELLS | $207,000 |
| STANFORD UNIVERSITY PALO ALTO, CA | CHARACTERIZATION OF NEURON-GLIAL-IMMUNE CELL INTERACTIONS IN SMA | $117,494 |
| UNIVERSITY OF FLORIDA GAINESVILLE, FL | CHARACTERIZATION OF MUSCLE ENVIRONMENT IN SMA | $197,907 |
| UNIVERSITY OF EDINBURGH | CHARACTERIZATION OF NEUROMUSCULAR JUNCTIONS IN SMA | $141,212 |
| BOSTON CHILDREN'S HOSPITAL BOSTON, MA | TESTING THERAPEUTICS THAT PROMOTE NEURON GROWTH IN SMA MODELS | $98,571 |
| JOHN HOPKINS UNIVERSITY BALTIMORE, MD | CHARACTERIZATION OF GENE EXPRESSION IN MOTOR NEURONS IN SMA | $238,814 |
| MUSCULAR DISTROPHY ASSOCIATION CHICAGO, IL | SUPPORT OF MUSCLE REGENERATION SUMMIT WITH KEY MUSCLE EXPERTS | $2,500 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| DINAKAR SINGH | BOARD CHAIRMAN | 1 | — |
| DOUGLAS COLE MD | DIRECTOR | 1 | — |
| GERALD FISCHBACH MD | DIRECTOR | 1 | — |
| ANDREW KNIGHT | DIRECTOR | 1 | — |
| JONATHAN LEFF | DIRECTOR | 1 | — |
| HELEN MEATES | DIRECTOR | 1 | — |
| STEPHEN MIKITA ESQ | DIRECTOR | 1 | — |
| JULI OH ESQ | TREASURER | 1 | — |
| SIMON PRISK ESQ | DIRECTOR | 1 | — |
| STORY LANDIS | DIRECTOR | 1 | — |
| LOREN ENG | PRESIDENT | 15 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Spinal Muscular Atrophy Foundation?
Spinal Muscular Atrophy Foundation is a private foundation focused on Education, based in JACKSON, WY. It holds $50.2M in total assets as of 2024.
How large is Spinal Muscular Atrophy Foundation?
As of 2024, Spinal Muscular Atrophy Foundation holds $50.2M in total assets with $19.5M in annual revenue. It awarded 11 grants totaling $1.5M in 2024.
Where does Spinal Muscular Atrophy Foundation operate?
Spinal Muscular Atrophy Foundation has awarded grants in California, Florida, Illinois, Massachusetts, Maryland, New York, Pennsylvania.
What size grants does Spinal Muscular Atrophy Foundation award?
In 2024, Spinal Muscular Atrophy Foundation awarded 11 grants totaling $1.5M — an average of about $136K per grant, based on its IRS Form 990 filings.
How much is Spinal Muscular Atrophy Foundation required to give away each year?
Private foundations must generally distribute about 5% of their assets annually. For 2024, Spinal Muscular Atrophy Foundation reported a distributable amount of $1.9M on its IRS Form 990-PF — the minimum it must pay out in qualifying distributions.
What is Spinal Muscular Atrophy Foundation's EIN?
Spinal Muscular Atrophy Foundation's EIN (Employer Identification Number) is 01-0759380. IRS Form 990 filing data is available on this page for 2020–2024.
Explore Open Grants
Browse active grant opportunities in Spinal Muscular Atrophy Foundation's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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