Civic Intelligence

International Rett Syndrome Foundation

EIN 31-1682518 • 501(c)3 • Cincinnati, OH

Profile

To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.

4500 Cooper Road Suite 204Cincinnati, OH 45242

www.rettsyndrome.org

Siviq Scores

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

Liabilities / Assets

39th percentile

0.06x

Higher debt load relative to assets than 39% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Liabilities / Revenue

33rd percentile

0.07x

Higher debt load relative to revenue than 33% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Net Margin

16th percentile

-15%

Higher net margin than 16% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Top Officer Pay

72nd percentile

$194,684

Higher top officer pay than 72% of similar nonprofits.

Top officer pay equals 4.0% of source-year revenue.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Asset Growth

9th percentile

-15%

Faster asset growth than 9% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Revenue Growth

33rd percentile

-0.9%

Faster revenue growth than 33% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Assets

Down

$5,325,567

Down $937,838 (-15%) from 2023

Liabilities

Down

$338,142

Down $41,073 (-11%) from 2023

Net Assets

Down

$4,987,425

Down $896,765 (-15%) from 2023

Revenue

Down

$4,813,748

Down $42,072 (-0.9%) from 2023

Expenses

Up

$5,531,022

Up $1,807,250 (+49%) from 2023

Net Income

Down

-$717,274

Down $1,849,322 (-163%) from 2023

Trend Graphs

Balance Sheet Trend

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

$8.0M$6.0M$4.0M$2.0M$0Assets 2012: $5,770,975Liabilities 2012: $4,161,334Net Assets 2012: $1,609,6412012Assets 2013: $5,595,449Liabilities 2013: $3,437,324Net Assets 2013: $2,158,1252013Assets 2014: $6,248,944Liabilities 2014: $3,825,144Net Assets 2014: $2,423,8002014Assets 2015: $6,236,910Liabilities 2015: $4,089,906Net Assets 2015: $2,147,0042015Assets 2016: $5,219,377Liabilities 2016: $1,964,935Net Assets 2016: $3,254,4422016Assets 2017: $6,181,787Liabilities 2017: $3,626,140Net Assets 2017: $2,555,6472017Assets 2018: $5,507,933Liabilities 2018: $3,466,658Net Assets 2018: $2,041,2752018Assets 2019: $6,238,495Liabilities 2019: $1,953,212Net Assets 2019: $4,285,2832019Assets 2020: $6,281,992Liabilities 2020: $659,024Net Assets 2020: $5,622,9682020Assets 2021: $7,416,506Liabilities 2021: $1,385,987Net Assets 2021: $6,030,5192021Assets 2022: $6,438,774Liabilities 2022: $1,972,873Net Assets 2022: $4,465,9012022Assets 2023: $6,263,405Liabilities 2023: $379,215Net Assets 2023: $5,884,1902023Assets 2024: $5,325,567Liabilities 2024: $338,142Net Assets 2024: $4,987,4252024

Highlighted filing

2024

Assets$5,325,567
Liabilities$338,142
Net Assets$4,987,425

Operations Trend

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

$6.0M$4.0M$2.0M$0-$2.0MExpenses 2012: $5,583,1252012Revenue 2013: $4,448,800Expenses 2013: $3,949,496Net Income 2013: $499,3042013Revenue 2014: $4,630,291Expenses 2014: $4,527,690Net Income 2014: $102,6012014Revenue 2015: $4,531,664Expenses 2015: $4,757,618Net Income 2015: -$225,9542015Revenue 2016: $4,666,339Expenses 2016: $3,639,939Net Income 2016: $1,026,4002016Revenue 2017: $3,821,932Expenses 2017: $5,001,314Net Income 2017: -$1,179,3822017Revenue 2018: $3,648,554Expenses 2018: $3,606,274Net Income 2018: $42,2802018Revenue 2019: $4,782,320Expenses 2019: $2,898,109Net Income 2019: $1,884,2112019Revenue 2020: $3,850,950Expenses 2020: $2,465,808Net Income 2020: $1,385,1422020Revenue 2021: $4,132,287Expenses 2021: $4,097,063Net Income 2021: $35,2242021Revenue 2022: $3,669,308Expenses 2022: $5,494,227Net Income 2022: -$1,824,9192022Revenue 2023: $4,855,820Expenses 2023: $3,723,772Net Income 2023: $1,132,0482023Revenue 2024: $4,813,748Expenses 2024: $5,531,022Net Income 2024: -$717,2742024

Highlighted filing

2024

Revenue$4,813,748
Expenses$5,531,022
Net Income-$717,274

Filings

Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jul 30, 2025
Return Version
2024v5.2
Gross Receipts
$8,730,876
Mission and Program Overview

Mission

The core mission of the IRSF is to fund research for treatments and a cure for Rett Syndrome while enhancing the overall quality of life for those living with Rett Syndrome by providing information, programs and services.

To fund reseach aimed at potential cures for Rett syndrome and to empower families through education.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$3,762,763$2,941,277▼ $821,486
Cash and Non-Interest-Bearing Accounts$2,205,423$2,178,126▼ $27,297
Pledges and Grants Receivable$169,301--
Prepaid Expenses and Deferred Charges$55,175$97,701▲ $42,526
Accounts Receivable$0$50,000▲ $50,000
Total Assets$6,263,405$5,325,567▼ $937,838
Other Assets Total$70,743$58,463▼ $12,280
Liabilities
Accounts Payable and Accrued Expenses$204,945$251,044▲ $46,099
Grants Payable$124,681$50,000▼ $74,681
Other Liabilities$49,589$37,098▼ $12,491
Total Liabilities$379,215$338,142▼ $41,073
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$4,582,266$3,780,033▼ $802,233
Net Assets With Donor Restrictions$1,301,924$1,207,392▼ $94,532
Total Net Assets Fund Balance$5,884,190$4,987,425▼ $896,765
Total Liabilities and Net Assets / Fund Balance$6,263,405$5,325,567▼ $937,838

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2024$1,103,954-▲ $142,027-$1,183,601
2023$1,030,621-▲ $128,447-$1,103,954
2022$1,366,359-▼ $223,748$111,990$1,030,621
2021$1,279,391-▲ $168,526$70,000$1,366,359
2020$1,203,115-▲ $135,634$59,358$1,279,391
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Nupur GargVP of ResearchFT$187,300$7,384$194,684
Melissa Kennedy - Exit 1224Chief Executive OfficerFT$186,940$2,279$189,219
Meghan CordeiroMarketing & Communication DirectorFT$113,308$6,234$119,542
Timothy FrankDevelopment DirectorFT$116,466$2,264$118,730
Drew JonesVP of Clinical DevelopmentFT$108,976$839$109,815
Leslie Mehta EsqInterim Chief Executive Officer-$5,208-$5,208

Board Members and Trustees

NameTitle
David Pass PharmDChairman
Steve WoodVice Chairman
Alan ShukovskyTrustee
Jospeh Horrigan MDTrustee
Laura Stoppel PhDTrustee
Lisa Monteggia PhDTrustee
Mary Forrest EngelTrustee
Parthy EvansTrustee - Start 07/24
Steve Marconi CPATrustee - Start 07/24
Gordon RichFounding Seat - Non Voting
Mitch BleskeTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$3,808,219
Program Service Revenue
$334,015
Investment Income
$261,285
Other Revenue
$410,229
All Other Contributions
$2,610,003
Change in Net Assets
$-717,274

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
Securities Publicly Traded1$131,317
Total Noncash Contributions1$131,317

Audited Revenue Reconciliation

Revenue per Audited Statements
$4,785,129
Revenue Not Reported on Financial Statements
$28,619
Revenue Not Reported on Form 990
$113,601
Total Revenue per Audited Statements
$4,898,730
Total Revenue per Form 990
$4,813,748
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$2,385,485
Grants and Similar Amounts Paid$1,856,999
Salaries, Compensation, and Employee Benefits$1,288,538
Total Fundraising Expense$428,352
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,678,482--$1,678,482
Other Salaries and Wages$724,341$121,077$121,113$966,531
Travel$690,145$16,127$70,107$776,379
Information Technology$198,410$10,695$82,711$291,816
Current Officers, Directors, Trustees, and Key Employees$136,099$29,164$29,164$194,427
Foreign Grants$178,517--$178,517
Fees for Services Other$82,572-$10,266$92,838
Payroll Taxes$67,444$11,981$11,565$90,990
Fees for Services Accounting-$86,530-$86,530
Office Expenses$25,557$4,117$4,256$33,930
Occupancy$22,739$3,202$3,544$29,485
Fees for Service Investment Mgmnt Fees-$28,619-$28,619
Pension Plan Contributions$15,551$5,429-$20,980
Insurance$15,566$2,502$2,369$20,437
Other Employee Benefits$11,665$2,013$1,932$15,610
Other Expenses$11,248$499$2,286$14,033
Fees for Services Legal-$2,589-$2,589
Total Functional Expenses$4,761,006$341,664$428,352$5,531,022

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$5,795,495
Total Expenses per Form 990$5,531,022
Expenses per Audited Statements$5,502,403
Expenses Not Reported on Form 990$293,092
Expenses Not Reported on Financial Statements$28,619
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
The General Hospital Corporation dba Massachusetts General HospitalSomerville, MA-Rett Syndrome Research$300,000
University of Wisconsin-MadisonMadison, WI-Rett Syndrome Research$300,000
The Regents of the University of ColoradoDenver, CO-Rett Syndrome Research$137,500
The University of Texas Southwestern Medical CenterDallas, TX-Rett Syndrome Research$137,500
Vanderbilt UniversityNashville, TN-Rett Syndrome Research$137,500
University of Colorado DenverDenver, CO-Rett Syndrome Research$125,000
North Carolina State UniversityRaleigh, NC-Rett Syndrome Research$120,982
The Rockefeller UniversityNew York, NY-Rett Syndrome Research$120,000
The University of North Carolina at Chapel HillChapel Hill, NC-Rett Syndrome Research$100,000
University of Virginia Rector & VisitorsCharlottesville, VA-Rett Syndrome Research$100,000
Regents of the University of CaliforniaDavis, CA-Rett Syndrome Research$50,000
Whitehead UniversityCambridge, MA-Rett Syndrome Research$50,000

International Summary

Offices
0
Employees
0
Spending
$178,517

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)Grants to recipients in the regionResearch Grant00$160,837
Middle East and North AfricaGrants to recipents in the regionResearch Grant00$17,680
East Asia and the PacificGrants to recipents in the regionResearch Grant00-
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Gross Income$691,356
Fundraising Direct Expenses$281,127
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Ohio Magato Stroll$148,168-$12,526-
Raise a Glass Houston$157,142$17,903$14,775$3,128
Total Events$1,889,572$691,356$281,127$410,229
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Right to Use Liability$37,098
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
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

The organization emails the 990 to board members, asking for comments or questions before it is filed.

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

Annually the entire board reviews the policy and a vote is taken. Additionally, when new members are elected they receive the policy and acknowledge their agreement.

Form 990, Part VI, Section B, line 15

We investigated compensation of other like-sized organizations. We also benchmarked against other nonprofits on their websites. Compensation is approved by the board.

Form 990, Part VI, Section C, line 19

The governing documents of the organization are available on the Ohio Secretary of State's website. The financial statements are available within the annual report which is available upon request. The conflict of interest policy is available upon request.

Filing and Contact Details

Filer

Filer Name
International Rett Syndrome Foundation
EIN
31-1682518
Phone
5138743020
Address
4500 Cooper Road Suite 204, Cincinnati, OH 45242
Doing Business As
Rettsyndromeorg

Signing Officer

Name
Laura Hameed
Title
Executive Director
Phone
5138743020
Signed
2025-07-30
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Melissa Kennedy
Formed
1999
Legal Domicile
Oh
Voting Board Members
11
Independent Board Members
11
Employees
16
Volunteers
200

Preparer

Firm
Barnes Dennig & Co LTD
Address
150 East Fourth Street, Cincinnati, OH 45202
Preparer
Paula Hume
Phone
5132418313
Supplemental Narrative

Additional Explanations

Form 990, Part XI, line 9:

Change in Beneficial Interest in Trust 721.

Form 990, Part XII, Line 2C:

There were no changes to the process in the current year.

Financial Statement Notes

Part V, Line 4:

Money earned from the endowment funds will be used to fund our program service of Research or Family Empowerment.

Part X, Line 2:

IRSF is exempt from income taxes under Section 501 of the Internal Revenue Code and a similar provision of Ohio law. However, the IRSF is subject to federal income tax on any unrelated business taxable income. IRSF's IRS Form 990 is subject to review and examination by federal and state authorities. IRSF believes it has appropriate support for any tax positions taken, and therefore, does not have any uncertain income tax positions that are material to the financial statements.

Part XI, Line 2D - Other Adjustments:

Special Event Expense 281,127. Change in Beneficial Interest in Trust 721.

Part XII, Line 2D - Other Adjustments:

Special Event Expense 281,127.

Raw XML AppendixShowing 400 of 868 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.

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IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt04500 Cooper Road Suite 204
IRS990/BooksInCareOfDetail/USAddress/CityNm0Cincinnati
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IRS990/Desc0Our commitment to finding treatments and a cure for Rett syndrome compels us to advance cutting edge research. Through our research programs we fund basic, translational grants throughout the world. We fund post-doctoral researchers, host science symposia to allow for discussions and networking of the world's Rett experts. We fund compound development directly through financial support of high throughput screening systems as well as financially supporting clinical trials. We actively support a clinical research network that develops care guidelines and contributes to a data registry that builds upon the NHS funded Natural History Study, and aims to continue to deepen our understanding of Rett syndrome and support drug development.
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IRS990/Form990PartVIISectionAGrp/PersonNm0Jospeh Horrigan MD
IRS990/Form990PartVIISectionAGrp/PersonNm1Lisa Monteggia PhD
IRS990/Form990PartVIISectionAGrp/PersonNm2David Pass PharmD
IRS990/Form990PartVIISectionAGrp/PersonNm3Mitch Bleske
IRS990/Form990PartVIISectionAGrp/PersonNm4Gordon Rich
IRS990/Form990PartVIISectionAGrp/PersonNm5Alan Shukovsky
IRS990/Form990PartVIISectionAGrp/PersonNm6Leslie Mehta Esq
IRS990/Form990PartVIISectionAGrp/PersonNm7Mary Forrest Engel
IRS990/Form990PartVIISectionAGrp/PersonNm8Steve Wood
IRS990/Form990PartVIISectionAGrp/PersonNm9Laura Stoppel PhD
IRS990/Form990PartVIISectionAGrp/PersonNm10Parthy Evans
IRS990/Form990PartVIISectionAGrp/PersonNm11Steve Marconi CPA
IRS990/Form990PartVIISectionAGrp/PersonNm12Melissa Kennedy - Exit 1224
IRS990/Form990PartVIISectionAGrp/PersonNm13Nupur Garg
IRS990/Form990PartVIISectionAGrp/PersonNm14Timothy Frank
IRS990/Form990PartVIISectionAGrp/PersonNm15Meghan Cordeiro
IRS990/Form990PartVIISectionAGrp/PersonNm16Drew Jones
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IRS990/Form990PartVIISectionAGrp/TitleTxt0Trustee
IRS990/Form990PartVIISectionAGrp/TitleTxt1Trustee
IRS990/Form990PartVIISectionAGrp/TitleTxt2Chairman
IRS990/Form990PartVIISectionAGrp/TitleTxt3Treasurer
IRS990/Form990PartVIISectionAGrp/TitleTxt4Founding Seat - Non Voting
IRS990/Form990PartVIISectionAGrp/TitleTxt5Trustee
IRS990/Form990PartVIISectionAGrp/TitleTxt6Interim Chief Executive Officer
IRS990/Form990PartVIISectionAGrp/TitleTxt7Trustee
IRS990/Form990PartVIISectionAGrp/TitleTxt8Vice Chairman
IRS990/Form990PartVIISectionAGrp/TitleTxt9Trustee
IRS990/Form990PartVIISectionAGrp/TitleTxt10Trustee - Start 07/24
IRS990/Form990PartVIISectionAGrp/TitleTxt11Trustee - Start 07/24
IRS990/Form990PartVIISectionAGrp/TitleTxt12Chief Executive Officer
IRS990/Form990PartVIISectionAGrp/TitleTxt13VP of Research
IRS990/Form990PartVIISectionAGrp/TitleTxt14Development Director
IRS990/Form990PartVIISectionAGrp/TitleTxt15Marketing & Communication Director
IRS990/Form990PartVIISectionAGrp/TitleTxt16VP of Clinical Development
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IRS990/MissionDesc0To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.
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IRS990/PrincipalOfficerNm0Melissa Kennedy
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IRS990/ProgSrvcAccomActy2Grp/Desc0We empower families through our robust educational programming, consisting of free monthly webinars covering health care topics of interest to families, as well as 4 in-person regional education days. We provide 24/7/365 access to 2 staff members who are devoted to family engagement. We provide educational materials for families, caregivers, schools and therapists. We advocate to federal officials, keeping Rett syndrome on the list of funding priorities. We work with industry in the design of clinical trials, ensuring the clinical trial environment is family centered. We support a network of clinics in North America that is building guidelines for clinical care, making those guidelines available to families as they work with their child's care team, ensuring they are receiving appropriate care.
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IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0Other Income - 2021 Amount: $ 19,643. 2022 Amount: $ 8,422. 2023 Amount: $ 355.
IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc0Schedule A, Part II, Line 10, Explanation of Other Income:
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