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Spinal Muscular Atrophy Foundation

Organization summary

Type of Nonprofit

Designated as a Organizations for any of the following purposes: religious, educational, charitable, scientific, literary, testing for public safety, fostering national or international amateur sports competition (as long as it doesn't provide athletic facilities or equipment), or the prevention of cruelty to children or animals.

Category: Education N.E.C. (NTEE)

Donations to this organization are tax deductible.

Summary charts: organization finances over time

Revenue
$25.4M (2022)

Expenses
$4.04M (2022)

Total Assets
$24.1M (2022)

Total Liabilities
$1.52M (2022)

Source: Form 990 tax filings from 2011 to 2022

Tax Filings by Year

Form 990 is an information return that most organizations claiming federal tax-exempt status must file yearly with the IRS. Nonprofit Explorer has IRS digitized Form 990 data for filings processed in 2012 and later. If this organization filed an amended return, it may not be reflected below. Duplicate download links may indicate a resubmission or amendment to this organization's original return. Form 990 data is from the IRS.

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$25,419,539
Expenses
$4,039,863
Net Income
$21,379,676
Net Assets
$22,557,909
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $139,266
0.5%
Interest Revenue $112,521
0.4%
Dividends $0
Sales of Assets -$266
Other Income $25,168,018
99.0%
Notable Expenses Percent of Total Expenses
Charitable Disbursements $2,294,074
56.8%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $24,079,888
Total Liabilities $1,521,979
Net Assets $22,557,909
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Chief Scientific Off) $737,500 $18,145
Kelly Howell (Associate Director) $235,000 $18,145
Ying Qian (Director Of Strat. &) $104,325 $18,145
Dinakar Singh (Board Chairman) $0 $0
Douglas Cole Md (Director) $0 $0
Gerald Fischbach Md (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Treasurer) $0 $0
Simon Prisk Esq (Director) $0 $0
Story Landis (Director) $0 $0
Loren Eng (President) $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$123,312
Expenses
$1,172,774
Net Income
-$1,049,462
Net Assets
$1,177,554
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $101,956
82.7%
Interest Revenue $28
0.0%
Dividends $0
Sales of Assets $0
Other Income $21,328
17.3%
Notable Expenses Percent of Total Expenses
Charitable Disbursements $1,741,786
> 100%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $2,033,752
Total Liabilities $856,198
Net Assets $1,177,554
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Chief Scientific Off) $626,000 $17,367
Ying Qian (Director Of Strat. &) $155,843 $17,367
Kelly Howell (Associate Director) $127,500 $17,367
Dinakar Singh (Board Chairman) $0 $0
Douglas Cole Md (Director) $0 $0
Gerald Fischbach Md (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Treasurer) $0 $0
Simon Prisk Esq (Director) $0 $0
Story Landis (Director) $0 $0
Loren Eng (President) $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$3,420,578
Expenses
$2,607,545
Net Income
$813,033
Net Assets
$2,224,780
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $3,400,965
99.4%
Interest Revenue $4,013
0.1%
Dividends $0
Sales of Assets $0
Other Income $15,600
0.5%
Notable Expenses Percent of Total Expenses
Charitable Disbursements $1,290,603
49.5%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $3,647,681
Total Liabilities $1,422,901
Net Assets $2,224,780
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Chief Scientific Off) $373,800 $16,299
Ying Qian (Director Of Strat. &) $125,000 $16,299
Kelly Howell (Associate Director) $92,500 $16,299
Dinakar Singh (Board Chairman) $0 $0
Douglas Cole Md (Director) $0 $0
Gerald Fischbach Md (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Treasurer) $0 $0
Simon Prisk Esq (Director) $0 $0
Story Landis (Director) $0 $0
Loren Eng (President) $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$192,934
Expenses
$1,361,565
Net Income
-$1,168,631
Net Assets
$1,414,662
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $156,215
81.0%
Interest Revenue $35,995
18.7%
Dividends $0
Sales of Assets $0
Other Income $724
0.4%
Notable Expenses Percent of Total Expenses
Charitable Disbursements $1,659,075
> 100%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $1,535,980
Total Liabilities $121,318
Net Assets $1,414,662
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Chief Scientific Off) $487,850 $15,355
Ying Qian (Director Of Strat. &) $142,220 $15,355
Kelly Howell (Associate Director) $117,940 $15,355
Dinakar Singh (Board Chairman) $0 $0
Douglas Cole Md (Director) $0 $0
Gerald Fischbach Md (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Treasurer) $0 $0
Simon Prisk Esq (Director) $0 $0
Story Landis (Director) $0 $0
Loren Eng (President) $0 $0

Document Links

Fiscal Year Ending Dec.
2018

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$5,171,229
Expenses
$4,096,823
Net Income
$1,074,406
Net Assets
$2,583,293
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $360,096
7.0%
Interest Revenue $35,481
0.7%
Dividends $0
Sales of Assets $0
Other Income $4,775,652
92.4%
Notable Expenses Percent of Total Expenses
Charitable Disbursements $3,940,450
96.2%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $3,030,276
Total Liabilities $446,983
Net Assets $2,583,293
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Chief Scientific Off) $482,682 $14,354
Ying Qian (Director Of Strat. &) $174,696 $14,354
Kelly Howell (Associate Director) $111,054 $14,354
Erika Poquette (Office Manager) $46,943 $8,146
Dinakar Singh (Board Chairman) $0 $0
Douglas Cole Md (Director) $0 $0
Gerald Fischbach Md (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Treasurer) $0 $0
Simon Prisk Esq (Director) $0 $0
Story Landis (Director) $0 $0
Loren Eng (President) $0 $0
David Weil Esq Resigned 051718 (Treasurer) $0 $0

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$1,663,877
Expenses
$2,157,997
Net Income
-$494,120
Net Assets
$1,508,887
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $592,456
35.6%
Interest Revenue $5,443
0.3%
Dividends $0
Sales of Assets $0
Other Income $1,065,978
64.1%
Notable Expenses Percent of Total Expenses
Charitable Disbursements $3,421,858
> 100%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $1,962,334
Total Liabilities $453,447
Net Assets $1,508,887
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Chief Scientific Off) $478,158 $13,435
Sergey Paushkin (Research Director) $249,987 $13,435
Ying Qian (Director Of Strat &) $170,660 $13,435
Kelly Howell (Associate Director) $84,356 $13,435
Erika Poquette (Office Manager) $67,621 $13,435
Dinakar Singh (Board Chairman) $0 $0
Douglas Cole Md (Director) $0 $0
Gerald Fischbach Md (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Director) $0 $0
Simon Prisk Esq (Director) $0 $0
Story Landis (Director) $0 $0
Loren Eng (President) $0 $0
David Weil Esq (Treasurer) $0 $0

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$6,473,033
Expenses
$4,464,395
Net Income
$2,008,638
Net Assets
$2,003,007
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $6,472,729
100.0%
Interest Revenue $328
0.0%
Dividends $0
Sales of Assets -$224
Other Income $200
0.0%
Notable Expenses Percent of Total Expenses
Charitable Disbursements $3,647,578
81.7%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $3,939,116
Total Liabilities $1,936,109
Net Assets $2,003,007
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Coo/Chief Sci Off) $430,410 $12,446
Sergey Paushkin (Research Director) $221,990 $12,446
Ying Qian (Assoc Direc Strat&Op) $166,517 $12,446
Virginia Leverche (Scientist) $79,474 $11,451
Sara Sunshine (Assoc Direc Research) $67,894 $8,466
Douglas Cole M D (Director) $0 $0
Gerald Fischbach M D (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Director) $0 $0
Simon Prisk Esq (Director) $0 $0
Srin Madipalli (Director) $0 $0
Story Landis (Director) $0 $0
Dinakar Singh (Chairman) $0 $0
Loren Eng (President) $0 $0
David Weil Esq (Treasurer) $0 $0

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$5,485,088
Expenses
$6,034,553
Net Income
-$549,465
Net Assets
-$102,291
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $5,484,957
100.0%
Interest Revenue $346
0.0%
Dividends $0
Sales of Assets -$215
Other Income $0
Notable Expenses Percent of Total Expenses
Charitable Disbursements $6,262,045
> 100%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $859,156
Total Liabilities $961,447
Net Assets -$102,291
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Coo/Chief Sci Off) $444,167 $11,822
Sergey Paushkin (Research Director) $235,000 $11,822
Ying Qian (Assoc Direc Strat&Op) $150,000 $11,822
Sara Sunshine (Management Associate) $87,034 $11,822
Melissa Markle (Office Manager) $78,116 $11,822
Douglas Cole M D (Director) $0 $0
Gerald Fischbach M D (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Director) $0 $0
Simon Prisk Esq (Director) $0 $0
Srin Madipalli (Director) $0 $0
Story Landis (Director) $0 $0
Dinakar Singh (Chairman) $0 $0
Loren Eng (President) $0 $0
David Weil Esq (Treasurer) $0 $0

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$3,439,546
Expenses
$3,366,084
Net Income
$73,462
Net Assets
$390,190
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $3,438,669
100.0%
Interest Revenue $69
0.0%
Dividends $0
Sales of Assets $808
0.0%
Other Income $0
Notable Expenses Percent of Total Expenses
Charitable Disbursements $3,497,739
> 100%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $1,428,536
Total Liabilities $1,038,346
Net Assets $390,190
Compensation
Key Employees and Officers Compensation Other
Karen Chen (Coo/Chief Sci Off) $450,000 $11,238
Sergey Paushkin (Research Director) $200,000 $11,238
Ying Qian (Assoc Direc Strat&Op) $147,167 $11,238
Melissa Markle (Office Manager) $65,868 $11,238
Katharine Von Herrmann (Project Manager) $64,546 $1,726
Douglas Cole M D (Director) $0 $0
Gerald Fischbach M D (Director) $0 $0
Andrew Knight (Director) $0 $0
Jonathan Leff (Director) $0 $0
Helen Meates (Director) $0 $0
Stephen Mikita Esq (Director) $0 $0
Juli Oh Esq (Director) $0 $0
Simon Prisk Esq (Director) $0 $0
Srin Madipalli (Director) $0 $0
Dinakar Singh (Chairman) $0 $0
Loren Eng (President) $0 $0
David Weil Esq (Treasurer) $0 $0

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$3,265,295
Expenses
$3,751,016
Net Income
-$485,721
Net Assets
$254,180
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $3,264,191
100.0%
Interest Revenue $98
0.0%
Dividends $0
Sales of Assets $1,006
0.0%
Other Income $0
Notable Expenses Percent of Total Expenses
Charitable Disbursements $3,349,031
89.3%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $1,058,832
Total Liabilities $804,652
Net Assets $254,180

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$3,367,981
Expenses
$3,644,248
Net Income
-$276,267
Net Assets
$684,113
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $3,367,820
100.0%
Interest Revenue $161
0.0%
Dividends $0
Sales of Assets $0
Other Income $0
Notable Expenses Percent of Total Expenses
Charitable Disbursements $3,775,893
> 100%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $1,161,449
Total Liabilities $477,336
Net Assets $684,113

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990-PF
Revenue
$3,617,537
Expenses
$11,260,308
Net Income
-$7,642,771
Net Assets
$908,656
Notable Sources of Revenue Percent of Total Revenue
Contributions Received $3,616,558
100.0%
Interest Revenue $979
0.0%
Dividends $0
Sales of Assets $0
Other Income $0
Notable Expenses Percent of Total Expenses
Charitable Disbursements $14,735,380
> 100%
Compensation of Officers* $0
* Officer compensation may be included in charitable disbursements, so Percent of Total Expenses may add up to greater than 100%.
Assets/Debt
Total Assets $1,645,297
Total Liabilities $736,641
Net Assets $908,656

Document Links

Fiscal Year Ending Dec.
2010

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2009

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2008

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2007

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2006

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2005

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2004

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

Fiscal Year Ending Dec.
2003

No Extracted Financial Data

Extracted financial data is not available for the forms filed in this tax period, but Form 990 documents are available for download.

Document Links

About This Data

Nonprofit Explorer includes summary data for nonprofit tax returns and full Form 990 documents, in both PDF and digital formats.

The summary data contains information processed by the IRS during the 2012-2019 calendar years; this generally consists of filings for the 2011-2018 fiscal years, but may include older records. This data release includes only a subset of what can be found in the full Form 990s.

In addition to the raw summary data, we link to PDFs and digital copies of full Form 990 documents wherever possible. This consists of separate releases by the IRS of Form 990 documents processed by the agency, which we update regularly.

We also link to copies of audits nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year since 2016. These audits are copied from the Federal Audit Clearinghouse.

Which Organizations Are Here?

Every organization that has been recognized as tax exempt by the IRS has to file Form 990 every year, unless they make less than $200,000 in revenue and have less than $500,000 in assets, in which case they have to file form 990-EZ. Organizations making less than $50,000 don’t have to file either form but do have to let the IRS they’re still in business via a Form 990N "e-Postcard."

Nonprofit Explorer has organizations claiming tax exemption in each of the 27 subsections of the 501(c) section of the tax code, and which have filed a Form 990, Form 990EZ or Form 990PF. Taxable trusts and private foundations that are required to file a form 990PF are also included. Small organizations filing a Form 990N "e-Postcard" are not included in this data.

Types of Nonprofits

There are 27 nonprofit designations based on the numbered subsections of section 501(c) of the tax code. See the list »

Get the Data

For those interested in acquiring the original data from the source, here’s where our data comes from:

  • Raw filing data. Includes EINs and summary financials as structured data.
  • Exempt Organization profiles. Includes organization names, addresses, etc. You can merge this with the raw filing data using EIN numbers.
  • Form 990 documents. Prior to 2017, these documents were obtained and processed by Public.Resource.org and ProPublica. Bulk PDF downloads since 2017 are available from the IRS.
  • Form 990 documents as XML files. Includes complete filing data (financial details, names of officers, tax schedules, etc.) in machine-readable format. Only available for electronically filed documents. Electronic data released prior to October 2021 is also available through Amazon Web Services.
  • Audits. PDFs of single or program-specific audits for nonprofit organizations that spent $750,000 or more in Federal grant money in a single fiscal year. Available for fiscal year 2015 and later.

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