Spinal Muscular Atrophy Foundation

JACKSON, WY EIN: 01-0759380

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

7states

Cities

BaltimoreBostonChicagoGainesvilleNew YorkPalo AltoPhiladelphiaRochester

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Qualifying Distributions
Net Investment Income
$0$7M$14M$21M$28M20202021202220232024
Metric202420232022
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

$0$373K$746K$1M$1M4 grants20204 grants20211 grants20229 grants202311 grants2024

Grant Insights

How this funder distributes its grants

Top Recipients

Top 10 recipients in 2024

JOHN HOPKINS UNIVERSITY$239KSWISS FEDERAL TECHNOLOGY…$218KSTANFORD UNIVERSITY$207KUNIVERSITY OF FLORIDA$198KSTANFORD UNIVERSITY$168KUNIVERSITY OF EDINBURGH$141KSTANFORD UNIVERSITY$117KBOSTON CHILDREN'S HOSPITAL$99KSTANFORD UNIVERSITY$69KSTANFORD UNIVERSITY$33K

Grant Size Distribution

29 grants across all recorded years

3<$50K10$50–100K14$100–250K1$250–500K1$500K–1M$1–5M$5M+

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).

RecipientPurposeAmount
STANFORD UNIVERSITY PALO ALTO, CAOVERSIGHT ON THE STANFORD-SMA FOUNDATION REGENERATIVE MEDICINE PROGRAM PROJECTS$167,825
STANFORD UNIVERSITY PALO ALTO, CADEVELOPMENT OF NONINVASIVE GENE EDITING METHODS$33,460
STANFORD UNIVERSITY PALO ALTO, CACHARACTERIZATION OF MUSCLE IN SMA PATIENTS$69,000
STANFORD UNIVERSITY PALO ALTO, CAGENERATION OF SPINAL CORD MOTOR NEURONS FROM PLURIPOTENT CELLS$207,000
STANFORD UNIVERSITY PALO ALTO, CACHARACTERIZATION OF NEURON-GLIAL-IMMUNE CELL INTERACTIONS IN SMA$117,494
UNIVERSITY OF FLORIDA GAINESVILLE, FLCHARACTERIZATION OF MUSCLE ENVIRONMENT IN SMA$197,907
UNIVERSITY OF EDINBURGH CHARACTERIZATION OF NEUROMUSCULAR JUNCTIONS IN SMA$141,212
BOSTON CHILDREN'S HOSPITAL BOSTON, MATESTING THERAPEUTICS THAT PROMOTE NEURON GROWTH IN SMA MODELS$98,571
JOHN HOPKINS UNIVERSITY BALTIMORE, MDCHARACTERIZATION OF GENE EXPRESSION IN MOTOR NEURONS IN SMA$238,814
MUSCULAR DISTROPHY ASSOCIATION CHICAGO, ILSUPPORT 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

NameTitleHoursCompensation
DINAKAR SINGHBOARD CHAIRMAN1
DOUGLAS COLE MDDIRECTOR1
GERALD FISCHBACH MDDIRECTOR1
ANDREW KNIGHTDIRECTOR1
JONATHAN LEFFDIRECTOR1
HELEN MEATESDIRECTOR1
STEPHEN MIKITA ESQDIRECTOR1
JULI OH ESQTREASURER1
SIMON PRISK ESQDIRECTOR1
STORY LANDISDIRECTOR1
LOREN ENGPRESIDENT15

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.

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Data last updated April 2026. Sourced from IRS Form 990-PF filings.

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