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Rett Syndrome Research Trust Inc

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: Health — General and Rehabilitative / Fund Raising and/or Fund Distribution (NTEE)

Donations to this organization are tax deductible.

Summary charts: organization finances over time

Revenue
$8.52M (2023)

Expenses
$12.3M (2023)

Total Assets
$18.5M (2023)

Total Liabilities
$11.3M (2023)

Source: Form 990 tax filings from 2011 to 2023

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.
2023

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$8,523,815
Expenses
$12,338,304
Net Income
-$3,814,489
Net Assets
$7,135,812
Notable Sources of Revenue Percent of Total Revenue
Contributions $8,080,684
94.8%
Program Services $106,950
1.3%
Investment Income $333,088
3.9%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $3,093
0.0%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $1,147,836
9.3%
Assets/Debt
Total Assets $18,457,084
Total Liabilities $11,321,272
Net Assets $7,135,812
Compensation
Key Employees and Officers Compensation Related Other
Monica Coenraads (Chief Executive Officer) $220,000 $0 $0
Timothy Freeman (Chief Development Officer) $220,000 $0 $0
Jana Von Hehn (Chief Scientific Officer) $203,333 $0 $0
Randall Carpenter (Chief Medical Officer) $165,000 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0
Brian Whitmer (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Marc Tesler (Trustee) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachael Stevenson (Trustee) $0 $0 $0
Rachel Rothschild (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2022

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$7,097,993
Expenses
$4,042,165
Net Income
$3,055,828
Net Assets
$10,950,301
Notable Sources of Revenue Percent of Total Revenue
Contributions $7,028,813
99.0%
Program Services $39,122
0.6%
Investment Income $30,209
0.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$151
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $1,108,689
27.4%
Assets/Debt
Total Assets $14,883,080
Total Liabilities $3,932,779
Net Assets $10,950,301
Compensation
Key Employees and Officers Compensation Related Other
Monica Coenraads (Chief Executive Officer) $220,000 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0
Brian Whitmer (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Marc Tesler (Trustee) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachael Stevenson (Trustee) $0 $0 $0
Rachel Rothschild (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0
Tony Schoener (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2021

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$8,124,811
Expenses
$4,739,121
Net Income
$3,385,690
Net Assets
$7,894,472
Notable Sources of Revenue Percent of Total Revenue
Contributions $7,981,420
98.2%
Program Services $115,073
1.4%
Investment Income $29,868
0.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$1,550
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $0
Professional Fundraising Fees $0
Other Salaries and Wages $991,287
20.9%
Assets/Debt
Total Assets $13,582,017
Total Liabilities $5,687,545
Net Assets $7,894,472
Compensation
Key Employees and Officers Compensation Related Other
Monica Coenraads (Chief Executive Officer) $220,000 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0
Brian Whitmer (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Marc Tesler (Trustee) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachael Stevenson (Trustee) $0 $0 $0
Rachel Rothschild (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2020

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$14,024,428
Expenses
$3,066,720
Net Income
$10,957,708
Net Assets
$4,508,783
Notable Sources of Revenue Percent of Total Revenue
Contributions $7,819,911
55.8%
Program Services $6,142,272
43.8%
Investment Income $62,327
0.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$82
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $605,000
19.7%
Professional Fundraising Fees $0
Other Salaries and Wages $576,235
18.8%
Assets/Debt
Total Assets $11,977,275
Total Liabilities $7,468,492
Net Assets $4,508,783
Compensation
Key Employees and Officers Compensation Related Other
Monica Coenraads (Chief Executive Officer) $220,000 $0 $39,967
Tim Freeman (Chief Development Officer) $220,000 $0 $0
Jana Von Hehn (Director Of Research) $185,000 $0 $0
Sharon Lynch (Associate Director Of Research) $171,154 $0 $0
Randall Carpenter (Chief Medical Officer) $165,000 $0 $0
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachael Stevenson (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0
Marc Tesler (Trustee) $0 $0 $0
Brian Whitmer (Trustee) $0 $0 $0
Rachel Rothschild (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2019

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$8,515,113
Expenses
$10,665,107
Net Income
-$2,149,994
Net Assets
-$6,448,925
Notable Sources of Revenue Percent of Total Revenue
Contributions $8,348,103
98.0%
Program Services $128,333
1.5%
Investment Income $36,443
0.4%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $2,234
0.0%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $561,250
5.3%
Professional Fundraising Fees $0
Other Salaries and Wages $790,652
7.4%
Assets/Debt
Total Assets $9,801,315
Total Liabilities $16,250,240
Net Assets -$6,448,925
Compensation
Key Employees and Officers Compensation Related Other
Timothy Riley (Chief Scientific Officer) $350,000 $0 $0
Tim Freeman (Chief Development Officer) $208,333 $0 $0
Monica Coenraads (Executive Director And Co ) $187,917 $0 $33,988
Jana Von Hehn (Director Of Research) $169,583 $0 $0
Randall Carpenter (Chief Medical Officer) $165,000 $0 $0
Edrian Colina (Creative Director) $126,667 $0 $16,553
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachel Stevenson (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0
Marc Tesler (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2018

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$9,664,180
Expenses
$11,377,192
Net Income
-$1,713,012
Net Assets
-$4,372,270
Notable Sources of Revenue Percent of Total Revenue
Contributions $9,639,117
99.7%
Program Services $0
Investment Income $23,178
0.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $1,885
0.0%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $636,250
5.6%
Professional Fundraising Fees $0
Other Salaries and Wages $458,756
4.0%
Assets/Debt
Total Assets $11,319,755
Total Liabilities $15,692,025
Net Assets -$4,372,270
Compensation
Key Employees and Officers Compensation Related Other
Randall Carpenter (Chief Medical Officer) $271,250 $0 $0
Tim Freeman (Chief Development Officer) $200,000 $0 $0
Jana Von Hehn (Director Of Research) $185,000 $0 $0
Monica Coenraads (Executive Director And Co ) $165,000 $0 $29,856
Edrian Colina (Creative Director) $115,666 $0 $14,996
Timothy Riley (Chief Scientific Officer) $102,083 $0 $0
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachel Stevenson (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0
Marc Tesler (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2017

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$12,528,990
Expenses
$7,443,444
Net Income
$5,085,546
Net Assets
-$2,659,258
Notable Sources of Revenue Percent of Total Revenue
Contributions $12,518,139
99.9%
Program Services $0
Investment Income $11,583
0.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$732
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $677,500
9.1%
Professional Fundraising Fees $0
Other Salaries and Wages $166,919
2.2%
Assets/Debt
Total Assets $11,844,163
Total Liabilities $14,503,421
Net Assets -$2,659,258
Compensation
Key Employees and Officers Compensation Related Other
Randall Carpenter (Chief Scientific Officer) $312,500 $0 $0
Tim Freeman (Chief Development Officer) $200,000 $0 $7,429
Monica Coenraads (Executive Director And Co ) $165,000 $0 $22,174
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachel Stevenson (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2016

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$7,860,118
Expenses
$8,548,403
Net Income
-$688,285
Net Assets
-$7,744,686
Notable Sources of Revenue Percent of Total Revenue
Contributions $7,849,652
99.9%
Program Services $0
Investment Income $10,864
0.1%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$398
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $740,660
8.7%
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $6,303,095
Total Liabilities $14,047,781
Net Assets -$7,744,686
Compensation
Key Employees and Officers Compensation Related Other
Randall Carpenter (Chief Scientific Officer) $250,000 $0 $0
Tim Freeman (Chief Development Officer) $200,000 $0 $9,899
Monica Coenraads (Executive Director And Co Founder) $137,834 $0 $14,331
Ingrid Harding (Co Founder And Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachel Stevenson (Trustee) $0 $0 $0
Stephanie Bohn (Trustee) $0 $0 $0
Alba Tull (Trustee) $0 $0 $0
Brad Zelinger (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2015

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$6,002,043
Expenses
$9,863,939
Net Income
-$3,861,896
Net Assets
-$7,056,401
Notable Sources of Revenue Percent of Total Revenue
Contributions $5,988,593
99.8%
Program Services $0
Investment Income $13,509
0.2%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets -$59
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $432,973
4.4%
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $5,070,915
Total Liabilities $12,127,316
Net Assets -$7,056,401
Compensation
Key Employees and Officers Compensation Related Other
Tim Freeman (Program Director) $200,000 $0 $9,492
Monica Coenraads (Executive Director And Tru) $130,000 $0 $13,740
Ingrid Harding (Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachael Bloom (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2014

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$5,784,614
Expenses
$6,564,742
Net Income
-$780,128
Net Assets
-$3,194,506
Notable Sources of Revenue Percent of Total Revenue
Contributions $5,769,884
99.7%
Program Services $0
Investment Income $14,729
0.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $1
0.0%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $349,792
5.3%
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $6,250,118
Total Liabilities $9,444,624
Net Assets -$3,194,506
Compensation
Key Employees and Officers Compensation Related Other
Tim Freeman (Program Director) $200,000 $0 $11,194
Monica Coenraads (Executive Director And Tru) $114,092 $0 $0
Ingrid Harding (Trustee) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Treasurer) $0 $0 $0
Rachael Bloom (Trustee) $0 $0 $0
Heidi Paradise (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2013

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$5,660,850
Expenses
$7,702,584
Net Income
-$2,041,734
Net Assets
-$2,414,378
Notable Sources of Revenue Percent of Total Revenue
Contributions $5,645,435
99.7%
Program Services $0
Investment Income $15,004
0.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $411
0.0%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $229,563
3.0%
Professional Fundraising Fees $0
Other Salaries and Wages $0
Assets/Debt
Total Assets $5,774,064
Total Liabilities $8,188,442
Net Assets -$2,414,378
Compensation
Key Employees and Officers Compensation Related Other
Tim Freeman (Program Director) $108,333 $0 $0
Monica Coenraads (Executive Director And Tru) $96,800 $0 $0
Ingrid Harding (Treasurer) $0 $0 $0
Lawrence Mattis (Secretary) $0 $0 $0
Adrian Bird (Trustee) $0 $0 $0
Heidi Epstein (Vice Chairman) $0 $0 $0
Anthony Schoener (Chairman) $0 $0 $0
Marci Valner (Trustee) $0 $0 $0
Rachael Bloom (Trustee) $0 $0 $0

Document Links

Fiscal Year Ending Dec.
2012

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$3,831,706
Expenses
$4,583,939
Net Income
-$752,233
Net Assets
-$372,644
Notable Sources of Revenue Percent of Total Revenue
Contributions $3,810,786
99.5%
Program Services $0
Investment Income $20,348
0.5%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $572
0.0%
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $93,865
2.0%
Professional Fundraising Fees $0
Other Salaries and Wages $11,093
0.2%
Assets/Debt
Total Assets $4,581,735
Total Liabilities $4,954,379
Net Assets -$372,644

Document Links

Fiscal Year Ending Dec.
2011

Extracted Financial Data

Extracted Financial Data from Form 990
Revenue
$4,026,844
Expenses
$3,847,471
Net Income
$179,373
Net Assets
$379,589
Notable Sources of Revenue Percent of Total Revenue
Contributions $4,013,762
99.7%
Program Services $0
Investment Income $13,082
0.3%
Bond Proceeds $0
Royalties $0
Rental Property Income $0
Net Fundraising $0
Sales of Assets $0
Net Inventory Sales $0
Other Revenue $0
Notable Expenses Percent of Total Expenses
Executive Compensation $88,000
2.3%
Professional Fundraising Fees $0
Other Salaries and Wages $2,683
0.1%
Assets/Debt
Total Assets $3,857,362
Total Liabilities $3,477,773
Net Assets $379,589

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

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.

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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 »

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