Civic Intelligence

Rett Syndrome Research Trust Inc

EIN 26-0687439 • 501(c)3 • Trumbull, CT

Profile

The organization's mission is focused on the development of treatments and cures for rett syndrome and related mecp2 disorders.

67 Under Cliff RoadTrumbull, CT 06611

www.rsrt.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

86th percentile

0.77x

Higher debt load relative to assets than 86% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Liabilities / Revenue

87th percentile

1.68x

Higher debt load relative to revenue than 87% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Net Margin

10th percentile

-26%

Higher net margin than 10% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Top Officer Pay

61st percentile

$220,000

Higher top officer pay than 61% of similar nonprofits.

Top officer pay equals 2.4% of source-year revenue.

501(c)3 • $10M-$25M nonprofits • Source year 2024

Asset Growth

68th percentile

10%

Faster asset growth than 68% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2023 to 2024

Revenue Growth

54th percentile

9.2%

Faster revenue growth than 54% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets86th percentile

Assets

Up

$20,356,580

Up $1,899,496 (+10%) from 2023

Liabilities

Up

$15,636,502

Up $4,315,230 (+38%) from 2023

Net Assets

Down

$4,720,078

Down $2,415,734 (-34%) from 2023

Operations
Liabilities / Revenue87th percentileNet Margin10th percentile

Revenue

Up

$9,307,309

Up $783,494 (+9.2%) from 2023

Expenses

Down

$11,731,465

Down $606,839 (-4.9%) from 2023

Net Income

Up

-$2,424,156

Up $1,390,333 (+36%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth68th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$30M$20M$10M$0-$10MAssets 2010: $2,066,355Liabilities 2010: $1,866,139Net Assets 2010: $200,2162010Assets 2011: $3,857,362Liabilities 2011: $3,477,773Net Assets 2011: $379,5892011Assets 2012: $4,581,735Liabilities 2012: $4,954,379Net Assets 2012: -$372,6442012Assets 2013: $5,774,064Liabilities 2013: $8,188,442Net Assets 2013: -$2,414,3782013Assets 2014: $6,250,118Liabilities 2014: $9,444,624Net Assets 2014: -$3,194,5062014Assets 2015: $5,070,915Liabilities 2015: $12,127,316Net Assets 2015: -$7,056,4012015Assets 2016: $6,303,095Liabilities 2016: $14,047,781Net Assets 2016: -$7,744,6862016Assets 2017: $11,844,163Liabilities 2017: $14,503,421Net Assets 2017: -$2,659,2582017Assets 2018: $11,319,755Liabilities 2018: $15,692,025Net Assets 2018: -$4,372,2702018Assets 2019: $9,801,315Liabilities 2019: $16,250,240Net Assets 2019: -$6,448,9252019Assets 2020: $11,977,275Liabilities 2020: $7,468,492Net Assets 2020: $4,508,7832020Assets 2021: $13,582,017Liabilities 2021: $5,687,545Net Assets 2021: $7,894,4722021Assets 2022: $14,883,080Liabilities 2022: $3,932,779Net Assets 2022: $10,950,3012022Assets 2023: $18,457,084Liabilities 2023: $11,321,272Net Assets 2023: $7,135,8122023Assets 2024: $20,356,580Liabilities 2024: $15,636,502Net Assets 2024: $4,720,0782024

Highlighted filing

2024

Assets$20,356,580
Liabilities$15,636,502
Net Assets$4,720,078
Open 2024 Filing

Operations Trend

Revenue Growth54th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$15M$10M$5.0M$0-$5.0MExpenses 2010: $1,596,5702010Expenses 2011: $3,847,4712011Expenses 2012: $4,583,9392012Revenue 2013: $5,660,850Expenses 2013: $7,702,584Net Income 2013: -$2,041,7342013Revenue 2014: $5,784,614Expenses 2014: $6,564,742Net Income 2014: -$780,1282014Revenue 2015: $6,002,043Expenses 2015: $9,863,939Net Income 2015: -$3,861,8962015Revenue 2016: $7,860,118Expenses 2016: $8,548,403Net Income 2016: -$688,2852016Revenue 2017: $12,528,990Expenses 2017: $7,443,444Net Income 2017: $5,085,5462017Revenue 2018: $9,664,180Expenses 2018: $11,377,192Net Income 2018: -$1,713,0122018Revenue 2019: $8,515,113Expenses 2019: $10,665,107Net Income 2019: -$2,149,9942019Revenue 2020: $14,024,428Expenses 2020: $3,066,720Net Income 2020: $10,957,7082020Revenue 2021: $8,124,811Expenses 2021: $4,739,121Net Income 2021: $3,385,6902021Revenue 2022: $7,097,993Expenses 2022: $4,042,165Net Income 2022: $3,055,8282022Revenue 2023: $8,523,815Expenses 2023: $12,338,304Net Income 2023: -$3,814,4892023Revenue 2024: $9,307,309Expenses 2024: $11,731,465Net Income 2024: -$2,424,1562024

Highlighted filing

2024

Revenue$9,307,309
Expenses$11,731,465
Net Income-$2,424,156
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$20,356,580
Liabilities
$15,636,502
Net assets
$4,720,078
Revenue
$9,307,309
Expenses
$11,731,465
Net income
-$2,424,156
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$20.4$15.6$4.72$9.31$11.7$2.42
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$18.5$11.3$7.14$8.52$12.3$3.81
2022XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$14.9$3.93$11.0$7.10$4.04$3.06
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$13.6$5.69$7.89$8.12$4.74$3.39
2020Facts available. Structured filing facts are available, but richer extracted sections are limited.$12.0$7.47$4.51$14.0$3.07$11.0
2019Facts available. Structured filing facts are available, but richer extracted sections are limited.$9.80$16.3$6.45$8.52$10.7$2.15
2018XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$11.3$15.7$4.37$9.66$11.4$1.71
2017Facts available. Structured filing facts are available, but richer extracted sections are limited.$11.8$14.5$2.66$12.5$7.44$5.09
2016XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$6.30$14.0$7.74$7.86$8.55$0.69
2015XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.07$12.1$7.06$6.00$9.86$3.86
2014Detailed filing. Detailed filing data is available for this year.$6.25$9.44$3.19$5.78$6.56$0.78
2013XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.77$8.19$2.41$5.66$7.70$2.04
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.58$4.95$0.37$4.58
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.86$3.48$0.38$3.85
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.07$1.87$0.20$1.60
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jul 8, 2025
Return Version
2024v5.2
Gross Receipts
$9,550,380
Mission and Program Overview

Mission

The organization's mission is focused on the development of treatments and cures for rett syndrome and related mecp2 disorders.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$14,145,135$13,681,914▼ $463,221
Cash and Non-Interest-Bearing Accounts$3,121,261$4,317,606▲ $1,196,345
Pledges and Grants Receivable$1,189,610$2,357,060▲ $1,167,450
Investments in Publicly Traded Securities$1,078--
Total Assets$18,457,084$20,356,580▲ $1,899,496
Liabilities
Grants Payable$11,286,147$15,533,252▲ $4,247,105
Accounts Payable and Accrued Expenses$35,125$103,250▲ $68,125
Total Liabilities$11,321,272$15,636,502▲ $4,315,230
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$7,135,812$4,720,078▼ $2,415,734
Total Net Assets Fund Balance$7,135,812$4,720,078▼ $2,415,734
Total Liabilities and Net Assets / Fund Balance$18,457,084$20,356,580▲ $1,899,496
Compensation and Service Providers
Top Officer Pay61st percentile

Employees

NameTitleFull / Part TimeBaseTotal
Jana Se Von HehnChief Scientific OfficerFT$220,000$220,000
Monica CoenraadsChief Executive OfficerFT$220,000$220,000
Timothy J FreemanChief Development OfficerFT$220,000$220,000
Robert DeansChief Technology OfficerFT$215,000$215,000

Board Members and Trustees

NameTitle
Heidi EpsteinVice Chairman
Ingrid HardingCo-founder and Trustee
Adrian BirdTrustee
Alba TullTrustee
Amy GilliandTrustee
Brad ZelingerTrustee
Brian WhitmerTrustee
Rachael StevensonTrustee
Rachel RothschildTrustee
Stephanie BohnTrustee
Lawrence MattisSecretary
Marci ValnerTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Edrain ColinaMarketing346 STRATFORD ROAD, Brooklyn, NY 11218$154,360
Revenue and Support

Revenue Composition

Contributions and Grants
$8,679,173
Program Service Revenue
$178,536
Investment Income
$449,600
Other Revenue
$0
All Other Contributions
$8,679,173
Change in Net Assets
$-2,424,156

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
No
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported Amount
Other Non Cash Contri Table0$248,716
Other Non Cash Contri Table2$9,500
Total Noncash Contributions2$258,216

Audited Revenue Reconciliation

Revenue per Audited Statements
$9,307,309
Revenue Not Reported on Financial Statements
$0
Revenue Not Reported on Form 990
$8,422
Total Revenue per Audited Statements
$9,315,731
Total Revenue per Form 990
$9,307,309
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$9,350,537
Salaries, Compensation, and Employee Benefits$1,227,852
Other Expenses$1,153,076
Total Fundraising Expense$712,318
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$9,350,537--$9,350,537
Other Salaries and Wages$775,529$127,977$191,520$1,095,026
Fees for Services Other$375,983$46,164$35,611$457,758
Payroll Taxes$51,144$8,440$12,630$72,214
Other Employee Benefits$42,927$7,084$10,601$60,612
All Other Expenses$45,874$2,852$5,010$53,736
Other Expenses$37,251$400$4,138$37,251
Office Expenses$6,642$1,097$1,640$9,379
Insurance$2,489$2,488$2,488$7,465
Occupancy$3,187$526$787$4,500
Total Functional Expenses$10,822,119$197,028$712,318$11,731,465

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$11,731,465
Total Expenses per Audited Statements$11,731,465
Total Expenses per Form 990$11,731,465
Expenses Not Reported on Financial Statements$0
Expenses Not Reported on Form 990$0
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
MitTrumbull, CT-Rett Research$1,244,914
University of MassachusettsTrumbull, CT-Rett Research$781,032
Emory UniversityTrumbull, CT-Rett Research$424,881
California Institute of TechnologiesTrumbull, CT-Rett Research$250,000
University of California DavisTrumbull, CT-Rna Editing$243,402
Jackson LabsTrumbull, CT-Rett Research$166,121
Rett Syndrome BiorepositoryTrumbull, CT-Rna Editing$163,173
Emerald InnovationsTrumbull, CT-Rett Research$107,145
Rett Syndrome Global RegistryTrumbull, CT-Rett Research$103,596
Yale UniversityTrumbull, CT-Rett Research$97,328
Columbia UniversityTrumbull, CT-Rett Research$96,578
Boston Childrens HospitalTrumbull, CT-Rett Research$90,152
Fred Hutchinson Cancer CenterTrumbull, CT-Rett Research$46,755
New York UniversityTrumbull, CT-Rett Research$30,234
CHILDREN'S HOSPITAL OF MONTEFIORETrumbull, CT-Rett Research$25,000
CourageneTrumbull, CT-Rett Research$15,000

International Summary

Offices
0
Employees
0
Spending
$1,200,323

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe (including Iceland & Greenland) - Albania, Andorra, Austria, BelgiumGrants to Recipients Located in the Region-00$1,200,323
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“Line 11a explanation - a copy of form 990 is given to the board of directors for review prior to its filing.”

Form 990, Part VI, Section B, Line 12C

“The organization maintains a conflict of interest policy that must be signed by the trustees on an annual basis.”

Form 990, Part VI, Section B, Line 15

“The compensation of the chief executive officer and chief development office is reviewed by the board and compared to the compensation of executive directors/presidents of organizations of a similar size.”

Form 990, Part VI, Section C, Line 18

“The organization's governing documents, policies and financial statements are available upon request and via their website”

Form 990, Part VI, Section C, Line 19

“The organization's governing documents, policies and financial statements are available upon request and via their website”

Filing and Contact Details

Filer

Filer Name
Rett Syndrome Research Trust Inc
EIN
26-0687439
Phone
2034450041
Address
67 UNDER CLIFF ROAD, TRUMBULL, CT 06611

Signing Officer

Name
Monica Coenraads
Title
Chief Executive Officer
Phone
2034450041
Signed
2025-07-08
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Monica Coenraads
Formed
2007
Legal Domicile
Ct
Voting Board Members
14
Independent Board Members
14
Employees
8
Volunteers
0

Preparer

Firm
Rolleri & Sheppard Cpas Llp
Address
2150 POST ROAD 5TH FL, FAIRFIELD, CT 06824
Preparer
John M Rolleri CPA
Phone
2032592727
Supplemental Narrative

Additional Explanations

FORM 990, PART XII, LINE 2C:

“The financial statements have been audited under generally accepted accounting principles.”

Raw XML AppendixShowing 400 of 734 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

Path#Value
IRS990/AccountantCompileOrReviewInd00
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IRS990/AccountsPayableAccrExpnssGrp/EOYAmt0103250
IRS990/ActivitiesConductedPrtshpInd00
IRS990/ActivityOrMissionDesc0THE ORGANIZATION'S MISSION IS FOCUSED ON THE DEVELOPMENT OF TREATMENTS AND CURES FOR RETT SYNDROME AND RELATED MECP2 DISORDERS.
IRS990/AllOtherContributionsAmt08679173
IRS990/AllOtherExpensesGrp/FundraisingAmt05010
IRS990/AllOtherExpensesGrp/ManagementAndGeneralAmt02852
IRS990/AllOtherExpensesGrp/ProgramServicesAmt045874
IRS990/AllOtherExpensesGrp/TotalAmt053736
IRS990/AnnualDisclosureCoveredPrsnInd01
IRS990/AuditCommitteeInd01
IRS990/BooksInCareOfDetail/PersonNm0MONICA COENRAADS
IRS990/BooksInCareOfDetail/PhoneNum02034450041
IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt067 UNDER CLIFF ROAD
IRS990/BooksInCareOfDetail/USAddress/CityNm0TRUMBULL
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0CT
IRS990/BooksInCareOfDetail/USAddress/ZIPCd006611
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IRS990/BusinessRlnWithFamMemInd00
IRS990/BusinessRlnWithOrgMemInd00
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IRS990/ChangeToOrgDocumentsInd00
IRS990/CntrctRcvdGreaterThan100KCnt01
IRS990/CollectionsOfArtInd00
IRS990/CompensationFromOtherSrcsInd00
IRS990/CompensationProcessCEOInd01
IRS990/CompensationProcessOtherInd01
IRS990/ConflictOfInterestPolicyInd01
IRS990/ConservationEasementsInd00
IRS990/ConsolidatedAuditFinclStmtInd00
IRS990/ContractorCompensationGrp/CompensationAmt0154360
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt0346 STRATFORD ROAD
IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm0BROOKLYN
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IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd011218
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IRS990/ContractorCompensationGrp/ServicesDesc0MARKETING
IRS990/CreditCounselingInd00
IRS990/CYBenefitsPaidToMembersAmt00
IRS990/CYContributionsGrantsAmt08679173
IRS990/CYGrantsAndSimilarPaidAmt09350537
IRS990/CYInvestmentIncomeAmt0449600
IRS990/CYOtherExpensesAmt01153076
IRS990/CYOtherRevenueAmt00
IRS990/CYProgramServiceRevenueAmt0178536
IRS990/CYRevenuesLessExpensesAmt0-2424156
IRS990/CYSalariesCompEmpBnftPaidAmt01227852
IRS990/CYTotalExpensesAmt011731465
IRS990/CYTotalFundraisingExpenseAmt0712318
IRS990/CYTotalProfFndrsngExpnsAmt00
IRS990/CYTotalRevenueAmt09307309
IRS990/DecisionsSubjectToApprovaInd00
IRS990/DeductibleArtContributionInd00
IRS990/DeductibleNonCashContriInd01
IRS990/DelegationOfMgmtDutiesInd00
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IRS990/Form990PartVIISectionAGrp/KeyEmployeeInd2X
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IRS990/Form990PartVIISectionAGrp/TitleTxt1TRUSTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt2TRUSTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt3TRUSTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt4VICE CHAIRMAN
IRS990/Form990PartVIISectionAGrp/TitleTxt5CO-FOUNDER AND TRUSTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt6SECRETARY
IRS990/Form990PartVIISectionAGrp/TitleTxt7TRUSTEE
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IRS990/Form990PartVIISectionAGrp/TitleTxt10TRUSTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt11TRUSTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt12TRUSTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt13CHIEF TECHNOLOGY OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt14CHIEF DEVELOPMENT OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt15CHIEF SCIENTIFIC OFFICER
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