Liabilities / Assets
39th percentile
Higher debt load relative to assets than 39% of similar nonprofits.
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.
Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.
Liabilities / Assets
39th percentile
Higher debt load relative to assets than 39% of similar nonprofits.
Liabilities / Revenue
33rd percentile
Higher debt load relative to revenue than 33% of similar nonprofits.
Net Margin
16th percentile
Higher net margin than 16% of similar nonprofits.
Top Officer Pay
72nd percentile
Higher top officer pay than 72% of similar nonprofits.
Top officer pay equals 4.0% of source-year revenue.
Asset Growth
9th percentile
Faster asset growth than 9% of similar nonprofits.
Revenue Growth
33rd percentile
Faster revenue growth than 33% of similar nonprofits.
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
Most recent year
2024 • Form 990Detailed filing. Detailed filing data is available for this year.
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.
| Line | Beginning | End | Change |
|---|---|---|---|
| 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 |
| Period | Beginning | Contrib. | Gain/Loss | Other Uses | End |
|---|---|---|---|---|---|
| 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 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Nupur Garg | VP of Research | FT | $187,300 | $7,384 | $194,684 |
| Melissa Kennedy - Exit 1224 | Chief Executive Officer | FT | $186,940 | $2,279 | $189,219 |
| Meghan Cordeiro | Marketing & Communication Director | FT | $113,308 | $6,234 | $119,542 |
| Timothy Frank | Development Director | FT | $116,466 | $2,264 | $118,730 |
| Drew Jones | VP of Clinical Development | FT | $108,976 | $839 | $109,815 |
| Leslie Mehta Esq | Interim Chief Executive Officer | - | $5,208 | - | $5,208 |
| Name | Title |
|---|---|
| David Pass PharmD | Chairman |
| Steve Wood | Vice Chairman |
| Alan Shukovsky | Trustee |
| Jospeh Horrigan MD | Trustee |
| Laura Stoppel PhD | Trustee |
| Lisa Monteggia PhD | Trustee |
| Mary Forrest Engel | Trustee |
| Parthy Evans | Trustee - Start 07/24 |
| Steve Marconi CPA | Trustee - Start 07/24 |
| Gordon Rich | Founding Seat - Non Voting |
| Mitch Bleske | Treasurer |
| Contribution Type | Contribution Count | Reported Amount |
|---|---|---|
| Securities Publicly Traded | 1 | $131,317 |
| Total Noncash Contributions | 1 | $131,317 |
| Line Item | Amount |
|---|---|
| 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 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| 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 |
| Line Item | Amount |
|---|---|
| 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 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| The General Hospital Corporation dba Massachusetts General Hospital | Somerville, MA | - | Rett Syndrome Research | $300,000 |
| University of Wisconsin-Madison | Madison, WI | - | Rett Syndrome Research | $300,000 |
| The Regents of the University of Colorado | Denver, CO | - | Rett Syndrome Research | $137,500 |
| The University of Texas Southwestern Medical Center | Dallas, TX | - | Rett Syndrome Research | $137,500 |
| Vanderbilt University | Nashville, TN | - | Rett Syndrome Research | $137,500 |
| University of Colorado Denver | Denver, CO | - | Rett Syndrome Research | $125,000 |
| North Carolina State University | Raleigh, NC | - | Rett Syndrome Research | $120,982 |
| The Rockefeller University | New York, NY | - | Rett Syndrome Research | $120,000 |
| The University of North Carolina at Chapel Hill | Chapel Hill, NC | - | Rett Syndrome Research | $100,000 |
| University of Virginia Rector & Visitors | Charlottesville, VA | - | Rett Syndrome Research | $100,000 |
| Regents of the University of California | Davis, CA | - | Rett Syndrome Research | $50,000 |
| Whitehead University | Cambridge, MA | - | Rett Syndrome Research | $50,000 |
| Region | Activity | Services | Offices | Employees | Spending |
|---|---|---|---|---|---|
| Europe (Including Iceland & Greenland) | Grants to recipients in the region | Research Grant | 0 | 0 | $160,837 |
| Middle East and North Africa | Grants to recipents in the region | Research Grant | 0 | 0 | $17,680 |
| East Asia and the Pacific | Grants to recipents in the region | Research Grant | 0 | 0 | - |
| Line Item | Amount |
|---|---|
| Fundraising Gross Income | $691,356 |
| Fundraising Direct Expenses | $281,127 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net 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 |
| Liability | Amount |
|---|---|
| Right to Use Liability | $37,098 |
“The organization emails the 990 to board members, asking for comments or questions before it is filed.”
“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.”
“We investigated compensation of other like-sized organizations. We also benchmarked against other nonprofits on their websites. Compensation is approved by the board.”
“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.”
“Change in Beneficial Interest in Trust 721.”
“There were no changes to the process in the current year.”
“Money earned from the endowment funds will be used to fund our program service of Research or Family Empowerment.”
“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.”
“Special Event Expense 281,127. Change in Beneficial Interest in Trust 721.”
“Special Event Expense 281,127.”
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/AccountantCompileOrReviewInd | 0 | 0 |
| IRS990/AccountsPayableAccrExpnssGrp/BOYAmt | 0 | 204945 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 251044 |
| IRS990/AccountsReceivableGrp/BOYAmt | 0 | 0 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 50000 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | To fund reseach aimed at potential cures for Rett syndrome and to empower families through education. |
| IRS990/AllOtherContributionsAmt | 0 | 2610003 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/AuditCommitteeInd | 0 | 1 |
| IRS990/BackupWthldComplianceInd | 0 | 1 |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | Brittney Gibson |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 5138743020 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 4500 Cooper Road Suite 204 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | Cincinnati |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | OH |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 45242 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | 0 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 2205423 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 2178126 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt | 0 | 29164 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 29164 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 136099 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 194427 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 1 |
| IRS990/CompensationProcessOtherInd | 0 | 1 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContriRptFundraisingEventAmt | 0 | 1198216 |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 3808219 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 1856999 |
| IRS990/CYInvestmentIncomeAmt | 0 | 261285 |
| IRS990/CYOtherExpensesAmt | 0 | 2385485 |
| IRS990/CYOtherRevenueAmt | 0 | 410229 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 334015 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | -717274 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 1288538 |
| IRS990/CYTotalExpensesAmt | 0 | 5531022 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 428352 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 4813748 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 0 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 1 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/Desc | 0 | Our 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. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 1 |
| IRS990/DoingBusinessAsName/BusinessNameLine1Txt | 0 | Rettsyndromeorg |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/DonorRestrictionNetAssetsGrp/BOYAmt | 0 | 1301924 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 1207392 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | 1 |
| IRS990/ElectionOfBoardMembersInd | 0 | 0 |
| IRS990/EmployeeCnt | 0 | 16 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 1 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 3676545 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 0 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 86530 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 86530 |
| IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt | 0 | 2589 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 2589 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 10266 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 82572 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 92838 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/ManagementAndGeneralAmt | 0 | 28619 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 28619 |
| IRS990/ForeignActivitiesInd | 0 | 1 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignGrantsGrp/ProgramServicesAmt | 0 | 178517 |
| IRS990/ForeignGrantsGrp/TotalAmt | 0 | 178517 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 0.50 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 12 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 13 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 14 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 15 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 16 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/HighestCompensatedEmployeeInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 7 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 8 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 9 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 10 | X |
| IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd | 11 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 3 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 4 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 5 | X |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 12 | 2279 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 13 | 7384 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 14 | 2264 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 15 | 6234 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 16 | 839 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 0 | Jospeh Horrigan MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | Lisa Monteggia PhD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | David Pass PharmD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | Mitch Bleske |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | Gordon Rich |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | Alan Shukovsky |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | Leslie Mehta Esq |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | Mary Forrest Engel |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | Steve Wood |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | Laura Stoppel PhD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | Parthy Evans |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | Steve Marconi CPA |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 12 | Melissa Kennedy - Exit 1224 |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 13 | Nupur Garg |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 14 | Timothy Frank |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 15 | Meghan Cordeiro |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 16 | Drew Jones |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
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| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 5208 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 12 | 186940 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 13 | 187300 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 14 | 116466 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 15 | 113308 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 16 | 108976 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 6 | 0 |
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| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 12 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 13 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 14 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 15 | 0 |
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| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | Trustee |
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| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | Treasurer |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | Founding Seat - Non Voting |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | Interim Chief Executive Officer |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | Vice Chairman |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | Trustee |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | Trustee - Start 07/24 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | Trustee - Start 07/24 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 12 | Chief Executive Officer |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 13 | VP of Research |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 14 | Development Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 15 | Marketing & Communication Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 16 | VP of Clinical Development |
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| IRS990/MissionDesc | 0 | To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. |
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| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 97701 |
| IRS990/PrincipalOfficerNm | 0 | Melissa Kennedy |
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| IRS990/ProgramServiceRevenueGrp/BusinessCd | 1 | 900099 |
| IRS990/ProgramServiceRevenueGrp/Desc | 0 | Conference Income |
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| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | We 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/ExplanationTxt | 0 | Other Income - 2021 Amount: $ 19,643. 2022 Amount: $ 8,422. 2023 Amount: $ 355. |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | Schedule A, Part II, Line 10, Explanation of Other Income: |
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