Liabilities / Assets
55th percentile
Higher debt load relative to assets than 55% of similar nonprofits.
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
55th percentile
Higher debt load relative to assets than 55% of similar nonprofits.
Liabilities / Revenue
54th percentile
Higher debt load relative to revenue than 54% of similar nonprofits.
Net Margin
94th percentile
Higher net margin than 94% of similar nonprofits.
Top Officer Pay
36th percentile
Higher top officer pay than 36% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
95th percentile
Faster asset growth than 95% of similar nonprofits.
Revenue Growth
96th percentile
Faster revenue growth than 96% of similar nonprofits.
Assets
Up$2,492,008
Up $1,329,453 (+114%) from 2022
Net Assets
Up$2,303,414
Up $1,140,859 (+98%) from 2022
Liabilities
Up$188,594
Up $188,594 from 2022
Revenue
Up$2,011,359
Up $1,399,718 (+229%) from 2022
Expenses
Up$913,309
Up $612,041 (+203%) from 2022
Net Income
Up$1,098,050
Up $787,677 (+254%) from 2022
To accelerate the discovery of treatments for chromosome 8p disorders with a translational research program and a standard of care to empower meaningful lives in a unified community today.
To accelerate the discovery of treatments and quality clinical care for children and adults with chromosome 8p disorders.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Pledges and Grants Receivable | $15,064 | $1,043,892 | ▲ $1,028,828 |
| Savings and Temporary Cash Investments | $732,236 | $874,742 | ▲ $142,506 |
| Cash and Non-Interest-Bearing Accounts | $415,255 | $573,374 | ▲ $158,119 |
| Total Assets | $1,162,555 | $2,492,008 | ▲ $1,329,453 |
| Liabilities | |||
| Accounts Payable and Accrued Expenses | - | $188,594 | - |
| Total Liabilities | $0 | $188,594 | ▲ $188,594 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $1,162,555 | $1,303,414 | ▲ $140,859 |
| Net Assets With Donor Restrictions | - | $1,000,000 | - |
| Total Net Assets Fund Balance | $1,162,555 | $2,303,414 | ▲ $1,140,859 |
| Total Liabilities and Net Assets / Fund Balance | $1,162,555 | $2,492,008 | ▲ $1,329,453 |
| Name | Title |
|---|---|
| Jahn Marie Surette | Director |
| Mehul Shah | Director |
| Thomas Peterson | Director |
| Wissam Nesr | Director |
| Shannon Clarke | Director Secretary |
| Bina Shah | FounderCEOTreasurer |
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| Rare-X | Research | 1012 14th Street NW Suite 500, Washington, DC 20005 | $178,601 |
| Perlara PBC | Research | 6000 Shoreline Ct Ste 204, South San Francisco, CA 94080 | $133,975 |
| Line Item | Amount |
|---|---|
| Other Expenses | $514,157 |
| Grants and Similar Amounts Paid | $378,466 |
| Total Fundraising Expense | $94,364 |
| Salaries, Compensation, and Employee Benefits | $20,686 |
| Professional Fundraising Fees | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Fees for Services Other | $375,650 | $8,248 | $79,640 | $463,538 |
| Grants to Domestic Orgs | $378,466 | - | - | $378,466 |
| Other Salaries and Wages | $10,343 | $10,343 | - | $20,686 |
| Information Technology | $9,782 | $1,593 | $6,463 | $17,838 |
| Office Expenses | $3,567 | $1,738 | $5,504 | $10,809 |
| Travel | $6,483 | - | $827 | $7,310 |
| Advertising | $2,694 | $392 | $1,930 | $5,016 |
| Fees for Services Legal | $750 | $3,036 | - | $3,786 |
| Other Expenses | $2,805 | - | - | $2,805 |
| Fees for Services Accounting | - | $1,693 | - | $1,693 |
| Insurance | - | $1,325 | - | $1,325 |
| Fees for Service Investment Mgmnt Fees | - | $37 | - | $37 |
| Total Functional Expenses | $790,540 | $28,405 | $94,364 | $913,309 |
| Line Item | Amount |
|---|---|
| Total Expenses per Form 990 | $913,309 |
| Expenses per Audited Statements | $913,272 |
| Total Expenses per Audited Statements | $913,272 |
| Expenses Not Reported on Financial Statements | $37 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| UC SanDiego | La Jolla, CA | 501c3 | Research | $204,311 |
| Yale University | New Haven, CT | 501c3 | Research | $60,686 |
| Rice University | Houston, TX | 501c3 | Research | $48,682 |
| University of Colorado | Denver, CO | 501c3 | Research | $30,000 |
| Line Item | Amount |
|---|---|
| Fundraising Gross Income | $64,997 |
| Fundraising Direct Expenses | $15,509 |
| Professional Fundraising Fees | $0 |
| Event | Gross Receipts | Gross Revenue | Direct Expenses | Net Income |
|---|---|---|---|---|
| Event 1 | $64,997 | $64,997 | $15,509 | $49,488 |
| Total Events | $64,997 | $64,997 | $15,509 | $49,488 |
“Bina & Mehul Shah are married.”
“The Final 990 (filed with the IRS) will be available at the next meeting of the board for inspection. In addition, upon request of any board member, a copy will be provided. If there are any material changes, an amended 990 will be filed.”
“The Organization enforces the conflict of interest policy by monitoring known relationships, questionnaires, and noting any changes in disclosed information. Any conflict is reviewed by the board before a decision is made as to whether to approve the transaction.”
“These documents are available to the public on its website.”
“These documents are available upon request.”
“Adjustment to tie net assets to the audit.”
“Fundraising Fees: $96,607Social Media: $9,203HR Fees: $728Other Prof Fees: $19,793Research Fees: $337,207”
“The Organization follows the Financial Accounting Standards Board Accounting Standards Codification, which provides guidance on accounting for uncertainty in income taxes recognized in The Organizations financial statements, if any. As of year end, The Organization had no unrecognized tax benefits related to uncertain tax positions in its information return that would qualify for either recognition or disclosure in its financial statements.The Organizations policy would be to recognize interest and penalties on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. Through year end, there have been no matters that would have resulted in an accrual for interest and/or penalties.”
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 | false |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 188594 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | To accelerate the discovery of treatments and quality clinical care for children and adults with chromosome 8p disorders. |
| IRS990/AddressChangeInd | 0 | X |
| IRS990/AdvertisingGrp/FundraisingAmt | 0 | 1930 |
| IRS990/AdvertisingGrp/ManagementAndGeneralAmt | 0 | 392 |
| IRS990/AdvertisingGrp/ProgramServicesAmt | 0 | 2694 |
| IRS990/AdvertisingGrp/TotalAmt | 0 | 5016 |
| IRS990/AllOtherContributionsAmt | 0 | 1930820 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/AuditCommitteeInd | 0 | true |
| IRS990/BackupWthldComplianceInd | 0 | true |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | The Organization |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 2122483260 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 787 Seventh Avenue 31st floor |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | New York |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | NY |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 10019 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | false |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOrgMemInd | 0 | false |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 415255 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 573374 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 2 |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | false |
| IRS990/CompensationProcessOtherInd | 0 | false |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/ContractorCompensationGrp/CompensationAmt | 0 | 178601 |
| IRS990/ContractorCompensationGrp/CompensationAmt | 1 | 133975 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 0 | 1012 14th Street NW Suite 500 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 1 | 6000 Shoreline Ct Ste 204 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 0 | Washington |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 1 | South San Francisco |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 0 | DC |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 1 | CA |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 0 | 20005 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 1 | 94080 |
| IRS990/ContractorCompensationGrp/ContractorName/PersonNm | 0 | Rare-X |
| IRS990/ContractorCompensationGrp/ContractorName/PersonNm | 1 | Perlara PBC |
| IRS990/ContractorCompensationGrp/ServicesDesc | 0 | Research |
| IRS990/ContractorCompensationGrp/ServicesDesc | 1 | Research |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 1930820 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 378466 |
| IRS990/CYInvestmentIncomeAmt | 0 | 31051 |
| IRS990/CYOtherExpensesAmt | 0 | 514157 |
| IRS990/CYOtherRevenueAmt | 0 | 49488 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 1098050 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 20686 |
| IRS990/CYTotalExpensesAmt | 0 | 913309 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 94364 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 2011359 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/Desc | 0 | Research Progress:In 2023, the Foundation funded 4 research projects, collaborating with UCSD, Yale, Mount Sinai, Van Andel Institute, Autism BrainNet and others to advance the understanding of 8p disorders. Notably, ongoing studies include assessing genome architecture, cellular and mitochondrial dysfunction while supporting pioneering technologies and disease models to study the complex neurological disorder. These collectively marked a significant step toward identifying therapeutic options.We launched our 8p Insights Portal which offers analysis of patient reported data, clinical data, and research studies to approved stakeholders. It is proprietary and continuing to develop to inform insights into the disorder and access to our growing biorepository. |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 1000000 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 1 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 709338 |
| IRS990/FamilyOrBusinessRlnInd | 0 | true |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 1693 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 1693 |
| IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt | 0 | 3036 |
| IRS990/FeesForServicesLegalGrp/ProgramServicesAmt | 0 | 750 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 3786 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 79640 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 8248 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 375650 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 463538 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/ManagementAndGeneralAmt | 0 | 37 |
| IRS990/FeesForSrvcInvstMgmntFeesGrp/TotalAmt | 0 | 37 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form8282PropertyDisposedOfInd | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 0 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 1 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 2 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 3 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 4 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 5 | 0.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 1.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 5.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1.00 |
| 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/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | 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/PersonNm | 0 | Jahn Marie Surette |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | Thomas Peterson |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | Mehul Shah |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | Wissam Nesr |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | Bina Shah |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | Shannon Clarke |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| 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/TitleTxt | 0 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | FounderCEOTreasurer |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | Director Secretary |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/FormationYr | 0 | 2018 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | true |
| IRS990/FundraisingActivitiesInd | 0 | true |
| IRS990/FundraisingDirectExpensesAmt | 0 | 15509 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 64997 |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 6 |
| IRS990/GrantAmt | 0 | 348466 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 378466 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 378466 |
| IRS990/GrantsToIndividualsInd | 0 | false |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossReceiptsAmt | 0 | 2026868 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | true |
| IRS990/IndependentAuditFinclStmtInd | 0 | true |
| IRS990/IndependentVotingMemberCnt | 0 | 6 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartIXInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIInd | 0 | X |
| IRS990/InformationTechnologyGrp/FundraisingAmt | 0 | 6463 |
| IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt | 0 | 1593 |
| IRS990/InformationTechnologyGrp/ProgramServicesAmt | 0 | 9782 |
| IRS990/InformationTechnologyGrp/TotalAmt | 0 | 17838 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 1325 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 1325 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 31051 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 31051 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/IRPDocumentCnt | 0 | 5 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | NY |
| IRS990/LoanOutstandingInd | 0 | false |
| IRS990/LobbyingActivitiesInd | 0 | false |
| IRS990/LocalChaptersInd | 0 | false |
| IRS990/MaterialDiversionOrMisuseInd | 0 | false |
| IRS990/MembersOrStockholdersInd | 0 | false |
| IRS990/MethodOfAccountingAccrualInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | true |
| IRS990/MinutesOfGoverningBodyInd | 0 | true |
| IRS990/MissionDesc | 0 | To accelerate the discovery of treatments and quality clinical care for children and adults with chromosome 8p disorders. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | false |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 1162555 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 2303414 |
| IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt | 0 | 49488 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | 49488 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 72409 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 1162555 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 1303414 |
| IRS990/NoListedPersonsCompensatedInd | 0 | X |
| IRS990/NoncashContributionsAmt | 0 | 10000 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 5504 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 1738 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 3567 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 10809 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherChangesInNetAssetsAmt | 0 | -29600 |
| IRS990/OtherExpensesGrp/Desc | 0 | Other |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 2805 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 2805 |
| IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt | 0 | 10343 |
| IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt | 0 | 10343 |
| IRS990/OtherSalariesAndWagesGrp/TotalAmt | 0 | 20686 |
| IRS990/OtherWebsiteInd | 0 | X |
| IRS990/OwnWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | false |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 15064 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 1043892 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrincipalOfficerNm | 0 | Bina Shah |
| IRS990/ProfessionalFundraisingInd | 0 | false |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | Community Outreach:We supported over 200 families through open science and clinical research roundtables and our Share What Works programming where leading experts and families shared their findings, experiences, and goals towards improving quality of life due to unmet medical needs. |
| IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt | 0 | 51201 |
| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | Clinics and Care:Our MultiDisciplinary clinic is implementing a standard of care with a large team of dedicated specialists to understand this rare complex disorder with tremendous support to families. Clinical Care Guidelines are under review towards publication. |
| IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt | 0 | 30001 |
| IRS990/ProgSrvcAccomActy3Grp/GrantAmt | 0 | 30000 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 599258 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 153818 |
| IRS990/PYInvestmentIncomeAmt | 0 | 12383 |
| IRS990/PYOtherExpensesAmt | 0 | 113575 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 310373 |
| IRS990/PYTotalExpensesAmt | 0 | 301268 |
| IRS990/PYTotalProfFndrsngExpnsAmt | 0 | 33875 |
| IRS990/PYTotalRevenueAmt | 0 | 611641 |
| IRS990/QuidProQuoContributionsInd | 0 | false |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | false |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 1098050 |
| IRS990/RegularMonitoringEnfrcInd | 0 | true |
| IRS990/RelatedEntityInd | 0 | false |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | false |
| IRS990/ReportInvestmentsOtherSecInd | 0 | false |
| IRS990/ReportLandBuildingEquipmentInd | 0 | false |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | false |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 732236 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 874742 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt | 0 | Unusual Grant: $1,600,000 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | Unusual grants Part II or Part III line 1 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 1930820 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 559258 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 632932 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 888647 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 213407 |
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| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 12383 |
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| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
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| IRS990ScheduleD/InvestmentExpensesNotIncldAmt | 0 | 37 |
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| IRS990ScheduleD/RevenueNotReportedAmt | 0 | 72409 |
| IRS990ScheduleD/RevenueNotReportedFinclStmtAmt | 0 | 37 |
| IRS990ScheduleD/RevenueSubtotalAmt | 0 | 2011322 |
| IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt | 0 | The Organization follows the Financial Accounting Standards Board Accounting Standards Codification, which provides guidance on accounting for uncertainty in income taxes recognized in The Organizations financial statements, if any. As of year end, The Organization had no unrecognized tax benefits related to uncertain tax positions in its information return that would qualify for either recognition or disclosure in its financial statements.The Organizations policy would be to recognize interest and penalties on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. Through year end, there have been no matters that would have resulted in an accrual for interest and/or penalties. |
| IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Footnote for uncertain tax position under FIN 48 (Part X) |
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| IRS990ScheduleD/TotalRevenuePerForm990Amt | 0 | 2011359 |
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| IRS990ScheduleI/RecipientTable/IRCSectionDesc | 3 | 501c3 |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | Research |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 1 | Research |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 2 | Research |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 3 | Research |
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| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 1 | Rice University |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 2 | Yale University |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 3 | UC SanDiego |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 0 | 846049811 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 1 | 741109620 |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 2 | 060646973 |
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| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 1 | 6100 Main St MSC 70 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 2 | PO Box 208356 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 3 | 9500 Gilman Dr |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 0 | Denver |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 1 | Houston |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 2 | New Haven |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 3 | La Jolla |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 0 | CO |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 1 | TX |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 2 | CT |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 3 | CA |
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| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 1 | 770051827 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 2 | 065208356 |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 3 | 92093 |
| IRS990ScheduleI/Total501c3OrgCnt | 0 | 4 |
| IRS990/ScheduleJRequiredInd | 0 | false |
| IRS990/ScheduleORequiredInd | 0 | true |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | Bina & Mehul Shah are married. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | The Final 990 (filed with the IRS) will be available at the next meeting of the board for inspection. In addition, upon request of any board member, a copy will be provided. If there are any material changes, an amended 990 will be filed. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | The Organization enforces the conflict of interest policy by monitoring known relationships, questionnaires, and noting any changes in disclosed information. Any conflict is reviewed by the board before a decision is made as to whether to approve the transaction. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | These documents are available to the public on its website. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | These documents are available upon request. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | Adjustment to tie net assets to the audit. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | Fundraising Fees: $96,607Social Media: $9,203HR Fees: $728Other Prof Fees: $19,793Research Fees: $337,207 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Officer directors etc family relationship Part VI line 2 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990 governing body review Part VI line 11 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Conflict of interest policy compliance Part VI line 12c |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990 availability to public Part VI line 18 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | Governing documents etc available to public Part VI line 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | Explanation of other changes in net assets or fund balances Part XI line 9 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | List of other fees for services expenses Part IX line 11g |
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| IRS990/SubjectToProxyTaxInd | 0 | false |
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| IRS990/TaxablePartyNotificationInd | 0 | false |
| IRS990/TaxExemptBondsInd | 0 | false |
| IRS990/TerminateOperationsInd | 0 | false |
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Displayed year
2023 • Form 990Detailed filing. Detailed filing data is available for this year.