Nonprofit · EIN 31-1682518
INTERNATIONAL RETT SYNDROME FOUNDATION
Also known as DBA RETT SYNDROME FOUNDATION INTL
Tax-exempt · CINCINNATI, OH 45242
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $4,265,935 | $5,190,108 | -$924,173 | $4,707,103 | $307,411 | $4,399,692 |
| December 31, 2024 | 990 | $4,813,748 | $5,531,022 | -$717,274 | $5,325,567 | $338,142 | $4,987,425 |
| December 31, 2023 | 990 | $4,855,820 | $3,723,772 | $1,132,048 | $6,263,405 | $379,215 | $5,884,190 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $3,822,542
- Program service revenue
- $323,344
- Investment income
- $187,696
- Net gain from sales of assets
- $58,085
- Net income from fundraising events
- -$67,647
- Other revenue
- -$67,647
Expenses
- Grants and similar amounts paid
- $1,611,176
- Compensation of officers, directors and key employees
- $267,354
- Other salaries and wages
- $1,008,278
- Salaries, compensation and benefits (total)
- $1,415,448
- Professional fundraising fees
- $0
- Legal fees
- $175
- Accounting fees
- $101,877
- Occupancy
- $28,318
- Travel
- $167,014
- Program services (functional)
- $4,168,957
- Management and general (functional)
- $443,727
- Fundraising (functional)
- $577,424
Balance sheet and other
- Total assets, start of year
- $5,325,567
- Total assets, end of year
- $4,707,103
- Total liabilities, end of year
- $307,411
- Net assets, end of year
- $4,399,692
- Publicly traded securities
- $3,579,036
- Net assets without donor restrictions
- $3,092,523
- Net assets with donor restrictions
- $1,307,169
- Gross receipts
- $5,066,382
- Employees
- 16
- Volunteers
- 200
- Year formed
- 1999
- State of legal domicile
- OH
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| LAURA HAMEED | CHIEF EXECUTIVE OFFICER - START 4/25 Officer | 40 | $175,000 | $3,813 |
| MEGHAN CORDEIRO | MARKETING & COMMUNICATION DIRECTOR Highest-paid employee | 40 | $113,218 | $4,947 |
| DOMINQUE PICHARD | CHIEF SCIENTIFIC OFFICER Highest-paid employee | 40 | $111,802 | $36 |
| LESLIE MEHTA ESQ | INTERIM CHIEF EXECUTIVE OFFICER - EXIT 5/25 Trustee or director, Officer | 0.5 | $88,542 | $0 |
| DAVID PASS PHARMD | CHAIRMAN Trustee or director, Officer | 1 | $0 | $0 |
| MITCH BLESKE | TREASURER Trustee or director, Officer | 1 | $0 | $0 |
| STEVE WOOD | VICE CHAIRMAN Trustee or director, Officer | 0.5 | $0 | $0 |
| ALAN SHUKOVSKY | TRUSTEE Trustee or director | 0.5 | $0 | $0 |
| JOSEPH HORRIGAN MD | TRUSTEE Trustee or director | 0.5 | $0 | $0 |
| LAURA STOPPEL PHD | TRUSTEE Trustee or director | 0.5 | $0 | $0 |
| LISA MONTEGGIA PHD | TRUSTEE Trustee or director | 0.5 | $0 | $0 |
| MARY FORREST ENGEL | TRUSTEE Trustee or director | 0.5 | $0 | $0 |
| PARTHY EVANS | TRUSTEE Trustee or director | 0.5 | $0 | $0 |
| STEVE MARCONI CPA | TRUSTEE Trustee or director | 0.5 | $0 | $0 |
990 for the year ended December 31, 2024: 17 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Nupur Garg | VP of Research Highest-paid employee | 40 | $187,300 | $7,384 |
| Melissa Kennedy - Exit 1224 | Chief Executive Officer Officer | 40 | $186,940 | $2,279 |
| Meghan Cordeiro | Marketing & Communication Director Highest-paid employee | 40 | $113,308 | $6,234 |
| Timothy Frank | Development Director Highest-paid employee | 40 | $116,466 | $2,264 |
| Drew Jones | VP of Clinical Development Highest-paid employee | 40 | $108,976 | $839 |
| Leslie Mehta Esq | Interim Chief Executive Officer Trustee or director, Officer | 0.5 | $5,208 | $0 |
| Jospeh Horrigan MD | Trustee Trustee or director | 0.5 | $0 | $0 |
| Lisa Monteggia PhD | Trustee Trustee or director | 0.5 | $0 | $0 |
| David Pass PharmD | Chairman Trustee or director, Officer | 1 | $0 | $0 |
| Mitch Bleske | Treasurer Trustee or director, Officer | 1 | $0 | $0 |
| Gordon Rich | Founding Seat - Non Voting Trustee or director, Officer | 0.5 | $0 | $0 |
| Alan Shukovsky | Trustee Trustee or director | 0.5 | $0 | $0 |
| Mary Forrest Engel | Trustee Trustee or director | 0.5 | $0 | $0 |
| Steve Wood | Vice Chairman Trustee or director, Officer | 0.5 | $0 | $0 |
| Laura Stoppel PhD | Trustee Trustee or director | 0.5 | $0 | $0 |
| Parthy Evans | Trustee - Start 07/24 Trustee or director | 0.5 | $0 | $0 |
| Steve Marconi CPA | Trustee - Start 07/24 Trustee or director | 0.5 | $0 | $0 |
990 for the year ended December 31, 2023: 19 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| Dominique Pichard | Chief Science Officer Key employee | 40 | $172,749 | $588 |
| Melissa Kennedy | Executive Director Officer | 40 | $168,053 | $2,207 |
| Nupur Garg | VP of Research Highest-paid employee | 40 | $125,320 | $4,888 |
| Timothy Frank | Chief Market & Dev. Officer Highest-paid employee | 40 | $117,632 | $2,089 |
| Meghan Cordeiro | Marketing & Communications Director Highest-paid employee | 40 | $104,388 | $6,371 |
| Steve Tomes | Trustee Trustee or director | 0.5 | $0 | $0 |
| Beth Farnum | Trustee Trustee or director | 0.5 | $0 | $0 |
| William Babiarz | Trustee Trustee or director | 0.5 | $0 | $0 |
| Jospeh Horrigan MD | Trustee Trustee or director | 0.5 | $0 | $0 |
| Lisa Monteggia PhD | Trustee Trustee or director | 0.5 | $0 | $0 |
| David Pass PharmD | Chairman Trustee or director, Officer | 1 | $0 | $0 |
| Mitch Bleske | Treasurer Trustee or director, Officer | 1 | $0 | $0 |
| Christian McMahan | Vice Chairman Trustee or director, Officer | 0.5 | $0 | $0 |
| Gordon Rich | Founding Seat - Non Voting Trustee or director, Officer | 0.5 | $0 | $0 |
| Alan Shukovsky | Trustee Trustee or director | 0.5 | $0 | $0 |
| Leslie Mehta | Secretary Trustee or director, Officer | 0.5 | $0 | $0 |
| Mary Forrest Engel | Trustee Trustee or director | 0.5 | $0 | $0 |
| Steve Wood | Trustee Trustee or director | 0.5 | $0 | $0 |
| Laura Stoppel | Trustee Trustee or director | 0.5 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 4500 COOPER RD STE 204, CINCINNATI, OH 45242-5600
- Principal officer (990 for 2025)
- LAURA HAMEED, 4500 COOPER ROAD SUITE 204, CINCINNATI, OH 45242
- Signed the 990
- LAURA HAMEED, CHIEF EXECUTIVE OFFICER
- Phone
- (513) 874-3020
- Website
- WWW.RETTSYNDROME.ORG
- Return prepared by
- BARNES DENNIG & CO LTD
Mission
TO ACCELERATE FULL SPECTRUM RESEARCH TO CURE RETT SYNDROME AND EMPOWER FAMILIES WITH INFORMATION, KNOWLEDGE, AND CONNECTIVITY.
Program accomplishments
- IRSF ADVANCES THE FULL SPECTRUM OF RETT SYNDROME RESEARCH - FROM BASIC SCIENCE TO CLINICAL DEVELOPMENT - WITH THE SINGULAR GOAL OF DELIVERING EFFECTIVE TREATMENTS AND, ULTIMATELY, A CURE. WE FUND TRANSLATIONAL RESEARCH GRANTS WORLDWIDE TO DEVELOP THE NEXT GENERATION OF RETT RESEARCH, CONVENE LEADING RESEARCHERS THROUGH OUR ANNUAL SCIENCE SYMPOSIA TO ACCELERATE DISCOVERY AND COLLABORATION, AND INVEST DIRECTLY IN THE THERAPEUTIC PIPELINE TO ACCELERATE TREATMENTS THAT WILL FUNDAMENTALLY CHANGE THE LIVES OF THOSE LIVING WITH RETT SYNDROME. THROUGH OUR CLINICAL RESEARCH NETWORK AND CENTERS OF EXCELLENCE, WE DRIVE THE DEVELOPMENT OF EVIDENCE-BASED CARE GUIDELINES, CONVENE KEY OPINION LEADERS, CONTRIBUTE TO A LONGITUDINAL DATA REGISTRY, AND BUILD UPON THE RETT NATURAL HISTORY STUDY, GENERATING THE REAL-WORLD EVIDENCE THAT INFORMS BOTH CARE STANDARDS AND REGULATORY PATHWAYS FOR NEW THERAPIES. THROUGH OUR NORTH AMERICAN CLINIC NETWORK, WE PROMOTE CONSISTENT, HIGH-QUALITY CARE BY MAKING EVIDENCE-BASED CLINICAL GUIDELINES ACCESSIBLE TO FAMILIES AND THE PROVIDERS WHO SERVE THEM.Expenses $3,549,456 · grants $1,611,176 · revenue $323,344
- IRSF STANDS ALONGSIDE FAMILIES AT EVERY STAGE OF THE RETT SYNDROME JOURNEY - FROM DIAGNOSIS THROUGH ADULTHOOD. WE BUILD AND SUPPORT THE COMMUNITY IN NUMEROUS WAYS. OUR FAMILY EMPOWERMENT TEAM DELIVERS EXPERT-LED EDUCATIONAL PROGRAMMING THROUGH WEBINARS AND REGIONAL IN-PERSON EDUCATION DAYS AND RESOURCE DEVELOPMENT, ENSURING FAMILIES HAVE ACCESS TO THE LATEST CLINICAL AND RESEARCH INSIGHTS REGARDLESS OF WHERE THEY LIVE. OUR COMMUNITY ENGAGEMENT TEAM CONNECTS FAMILIES WITH IRSF AND WITH EACH OTHER TO ENSURE THEY HAVE AROUND THE CLOCK GUIDANCE, CONNECTION, AND SUPPORT. WE DEVELOP AND DISTRIBUTE EDUCATIONAL RESOURCES TAILORED FOR FAMILIES, CAREGIVERS, EDUCATORS, AND THERAPISTS. WE ENGAGE FEDERAL POLICYMAKERS TO KEEP RETT SYNDROME A NATIONAL RESEARCH FUNDING PRIORITY AND WORK DIRECTLY WITH INDUSTRY PARTNERS TO AMPLIFY THE PATIENT VOICE IN DRUG DEVELOPMENT TO ENSURE CLINICAL TRIAL DESIGN REFLECTS THE REALITIES OF LIVING WITH RETT.Expenses $619,501
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 31-1682518
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2000
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H128)
- Assets (IRS master file)
- $4,707,103
- Income (IRS master file)
- $5,066,382
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $4,265,935 | $5,190,108 | $4,707,103 | XML |
| 990 | December 2024 | $4,813,748 | $5,531,022 | $5,325,567 | XML |
| 990 | December 2023 | $4,855,820 | $3,723,772 | $6,263,405 | XML |
| 990 | December 2022 | $3,669,308 | $5,494,227 | $6,438,774 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 31-1682518).
Questions about INTERNATIONAL RETT SYNDROME FOUNDATION
- What is the EIN of INTERNATIONAL RETT SYNDROME FOUNDATION?
- The employer identification number (EIN) of INTERNATIONAL RETT SYNDROME FOUNDATION is 31-1682518.
- Is INTERNATIONAL RETT SYNDROME FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2000.
- Are donations to INTERNATIONAL RETT SYNDROME FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does INTERNATIONAL RETT SYNDROME FOUNDATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of INTERNATIONAL RETT SYNDROME FOUNDATION due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did INTERNATIONAL RETT SYNDROME FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of INTERNATIONAL RETT SYNDROME FOUNDATION?
- The 990 for the year ended December 31, 2025 names LAURA HAMEED.
- Who are the officers and directors of INTERNATIONAL RETT SYNDROME FOUNDATION?
- The 990 for the year ended December 31, 2025 lists 14 people; 4 received compensation from the organization, the highest $175,000 (LAURA HAMEED, CHIEF EXECUTIVE OFFICER - START 4/25).
- How much revenue does INTERNATIONAL RETT SYNDROME FOUNDATION have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $4,265,935, expenses of $5,190,108 and total assets of $4,707,103 at year end.
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