Spinal Muscular Atrophy Foundation
The Spinal Muscular Atrophy Foundation is a private foundation based in Jackson, Wyoming. Its mission is to accelerate the development of treatments for spinal muscular atrophy (SMA), and its research funding is focused on drug discovery and clinical development of SMA therapeutics.
Spinal Muscular Atrophy Foundation at a glance
In short: Spinal Muscular Atrophy Foundation gave $1.5M across 11 grants in 2024 (avg $136K), top state California. Source: 2024 IRS Form 990-PF.
- Annual giving (2024)
- $1,491,789
- +29.1% vs 2023
- Grants made (2024)
- 11
- +22.2% vs 2023
- Average grant
- $135,617
- +5.6% vs 2023
- Median grant
- $141,212
- Total assets
- $50,173,258
- +48.9% vs 2023
- Primary geography
- California (40% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990-PF, 2024 View filing
Data from IRS Form 990-PF, 2024; updated October 2026.
How to apply to Spinal Muscular Atrophy Foundation
- Accepts unsolicited proposals
- No
- Invitation Only
-
The Foundation does not accept unsolicited requests for funds. Only principal investigators can submit a letter of intent; grant applications are accepted by invitation only.
- Contact
Mailing address: 970 W Broadway Ste E Pmb 140, Jackson, WY 83001
Phone: (646) 253-7100
Website: https://www.smafoundation.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who Spinal Muscular Atrophy Foundation funds
How this funder distributes its grants
Top Recipients
Top 7 recipients in 2024
The largest 2024 recipient was Stanford University ($595K across 5 grants). Together the top 7 received $1.5M.
Grant Size Distribution
29 grants across all recorded years
The most common grant size was in the $100–250K range: 14 grants of 29 (48%).
Geographic Focus
Where this funder awards grants
The 2024 filing reports that grant dollars went to recipients in California (40%), Maryland (16%), Florida (13%), and Massachusetts (7%). It lists a further 24% without an identified recipient state.
Grant Distribution by State
Share of 2024 grant dollars across all 11 itemized grants.
Cities
How Spinal Muscular Atrophy Foundation gives
- Giving grew 150% from 2021 to 2024. Method
- In 2024 it paid out 144% of its IRS minimum distribution (the 5% rule). Method
From the foundation's IRS Form 990-PF filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $326K (2020) to $1.5M (2024). In 2024 it made 11 grants totaling $1.5M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| John Hopkins University Baltimore, MD | Characterization of gene expression in motor neurons in sma | $238,814 |
| Swiss Federal Technology Institute of Lausanne | Testing of Mitochondrial Modulators in Sma Models | $218,006 |
| Stanford University Palo Alto, CA | Generation of spinal cord motor neurons from pluripotent cells | $207,000 |
| University of Florida Gainesville, FL | Characterization of Muscle Environment in Sma | $197,907 |
| Stanford University Palo Alto, CA | Oversight on the stanford-sma foundation regenerative medicine program projects | $167,825 |
| University of Edinburgh | Characterization of Neuromuscular Junctions in Sma | $141,212 |
| Stanford University Palo Alto, CA | Characterization of Neuron-Glial-Immune Cell Interactions in Sma | $117,494 |
| Boston Children's Hospital Boston, MA | Testing therapeutics that promote neuron growth in sma models | $98,571 |
| Stanford University Palo Alto, CA | Characterization of Muscle in Sma Patients | $69,000 |
| Stanford University Palo Alto, CA | Development of Noninvasive Gene Editing Methods | $33,460 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Qualifying Distributions | Net Investment Income | Distributable Amount |
|---|---|---|---|---|---|---|---|---|
| 2024 | $50,173,258 | $19,527,538 | $4,733,792 | $1,491,789 | 11 | $2,774,807 | $19,480,858 | $1,929,477 |
| 2023 | $33,691,989 | $12,507,750 | $3,641,528 | $1,155,632 | 9 | $2,548,145 | $12,455,336 | $1,163,457 |
| 2022 | $24,079,888 | $25,419,539 | $4,039,863 | $653,689 | 1 | $2,294,074 | $24,586,127 | $138,664 |
| 2021 | $2,033,752 | $123,312 | $1,172,774 | $597,641 | 4 | $1,741,786 | $21,356 | $34,844 |
| 2020 | $3,647,681 | $3,420,578 | $2,607,545 | $326,352 | 4 | — | $19,013 | $40,660 |
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.
Research compiled by Grantable AI from public sources. Last updated September 2026.
Mission & Focus Areas
The Foundation’s stated mission is to accelerate the development of treatments for SMA. Its goals include building academic and industry alliances; developing research tools; funding novel preclinical and clinical research; and educating legislators, government agencies, and the media about SMA research.
The Foundation reports investing in basic and translational research to understand SMA biology, identify therapeutic targets, and develop research tools, as well as clinical research infrastructure, studies, and trial resources. Its website says research assets are made available to the biomedical research community at minimal or no cost.
Grantmaking
In filing year 2024, the Foundation reported 11 grants totaling $1,491,789. Grant sizes ranged from $2,500 to $238,814, with a median grant of $141,212. Notable awards included:
Leadership & Key People
Leadership team and compensation from IRS filings
The 2024 filing lists Dinakar Singh as board chairman. Directors are Douglas Cole, MD; Gerald Fischbach, MD; Andrew Knight; Jonathan Leff; Helen Meates; Stephen Mikita, Esq.; Simon Prisk, Esq.; and Story Landis. Juli Oh, Esq., is listed as treasurer.
Spinal Muscular Atrophy Foundation is led by Loren Eng, President on every filing since 2020; none of the 11 officers listed in 2024 report compensation.
Officers on the 2024 filing
Loren Eng
President
On filings since 2020
15 hrs/week
No compensation reported
Dinakar Singh
Board Chairman
On filings since 2020
1 hr/week
No compensation reported
Andrew Knight
Director
On filings since 2020
1 hr/week
No compensation reported
Douglas Cole MD
Director
On filings since 2020
1 hr/week
No compensation reported
Gerald Fischbach MD
Director
On filings since 2020
1 hr/week
No compensation reported
Helen Meates
Director
On filings since 2020
1 hr/week
No compensation reported
Jonathan Leff
Director
On filings since 2020
1 hr/week
No compensation reported
Simon Prisk Esq.
Director
On filings since 2020
1 hr/week
No compensation reported
Stephen Mikita Esq.
Director
On filings since 2020
1 hr/week
No compensation reported
Story Landis
Director
On filings since 2020
1 hr/week
No compensation reported
Juli Oh Esq.
Treasurer
On filings since 2020
1 hr/week
No compensation reported
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about Spinal Muscular Atrophy Foundation
How much does Spinal Muscular Atrophy Foundation give each year?
Spinal Muscular Atrophy Foundation gave $1.5M across 11 grants in 2024, according to its 2024 IRS Form 990-PF. In 2023 it gave $1.2M across 9 grants.
What is Spinal Muscular Atrophy Foundation's typical grant size?
Spinal Muscular Atrophy Foundation's median grant in 2024 was $141,212, and its average grant was $135,617, across 11 grants on its 2024 IRS Form 990-PF.
Where does Spinal Muscular Atrophy Foundation give grants?
Spinal Muscular Atrophy Foundation's top state is California, with 40% of the grant dollars itemized on its 2024 IRS Form 990-PF. The next largest states were Maryland (16%) and Florida (13%). The most frequent recipient cities were Palo Alto, CA (5 grants).
Does Spinal Muscular Atrophy Foundation give general operating support?
Not in 2024: none of the 11 grants with a stated purpose on Spinal Muscular Atrophy Foundation's 2024 IRS Form 990-PF were described as general or operating support.
Who are Spinal Muscular Atrophy Foundation's largest grantees?
Spinal Muscular Atrophy Foundation's largest 2024 grantees include Stanford University ($594,779 across 5 grants), John Hopkins University ($238,814) and Swiss Federal Technology Institute of Lausanne ($218,006), according to its 2024 IRS Form 990-PF. Together they received 70% of its itemized 2024 grant dollars.
How large is Spinal Muscular Atrophy Foundation?
Spinal Muscular Atrophy Foundation reported $50.2M in total assets on its 2024 IRS Form 990-PF. It paid out $2.8M in qualifying distributions that year, against a required minimum of $1.9M (roughly 5% of its investment assets).
What does Spinal Muscular Atrophy Foundation fund?
The Foundation’s stated mission is to accelerate the development of treatments for SMA. See mission & focus areas ↑
How do I apply for a grant from Spinal Muscular Atrophy Foundation?
The Foundation does not accept unsolicited requests for funds. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
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.
Does Spinal Muscular Atrophy Foundation accept unsolicited proposals?
No, according to Grantable's research on the foundation's published guidelines. See how to apply ↑
Data last updated October 2026. Sourced from IRS Form 990-PF filings. Research dossier generated September 2026.
Data update history
(1)
When this profile's IRS filing data changed on Grantable
- IRS filings on file for fiscal years 2020–2024
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