Liabilities / Assets
56th percentile
Tied with the lowest-debt nonprofits in its peer group.
990 • Fiscal year 2021 • EIN 46-5662435
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
56th percentile
Tied with the lowest-debt nonprofits in its peer group.
Liabilities / Revenue
56th percentile
Tied with the lowest-debt nonprofits in its peer group.
Net Margin
64th percentile
Higher net margin than 64% of similar nonprofits.
Top Officer Pay
97th percentile
Higher top officer pay than 97% of similar nonprofits.
Top officer pay equals 28.5% of source-year revenue.
Asset Growth
68th percentile
Faster asset growth than 68% of similar nonprofits.
Revenue Growth
59th percentile
Faster revenue growth than 59% of similar nonprofits.
Assets
Up$288,110
Up $53,568 (+23%) from 2020
Net Assets
Up$288,110
Up $53,568 (+23%) from 2020
Liabilities
Flat$0
Flat from 2020
Revenue
Up$280,812
Up $37,667 (+15%) from 2020
Expenses
Up$227,243
Up $200,787 (+759%) from 2020
Net Income
Down$53,569
Down $163,120 (-75%) from 2020
We are a rare disease patient advocacy organization. Our mission is to support medical research that will lead to safe and effective treatments for individuals with Snyder-Robinson Syndrome and related disorders; and for related scientific and charitable purposes.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Cash and Non-Interest-Bearing Accounts | $234,542 | $288,110 | ▲ $53,568 |
| Total Assets | $234,542 | $288,110 | ▲ $53,568 |
| Liabilities | |||
| Total Liabilities | $0 | $0 | → $0 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $234,542 | $288,110 | ▲ $53,568 |
| Net Assets With Donor Restrictions | $0 | $0 | → $0 |
| Total Net Assets Fund Balance | $234,542 | $288,110 | ▲ $53,568 |
| Total Liabilities and Net Assets / Fund Balance | $234,542 | $288,110 | ▲ $53,568 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Cameron Hancock | Director of Business Development & Membership | PT | $40,000 | $40,000 | $80,000 |
| Teri Koerner | Director of Research | PT | $40,000 | $40,000 | $80,000 |
| Name | Title |
|---|---|
| Dr Mark Gallagher | Chairman, Board of Directors |
| Dr Anthony Pegg | Director |
| Dr Jeffrey Lindeman | Director |
| Dr Mary Jo Kutler | Director |
| Dr Robin Carlson | Director |
| Tom Dolan | Director |
| Michael Raymond | Executive Director |
| Frank Marchetti | Chief Financial Officer |
| Christopher Abbott | Chief Information Officer |
| Katia Luedtke | General Counsel |
| Line Item | Amount |
|---|---|
| Other Expenses | $142,105 |
| Salaries, Compensation, and Employee Benefits | $85,138 |
| Grants and Similar Amounts Paid | $0 |
| Professional Fundraising Fees | $0 |
| Total Fundraising Expense | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Current Officers, Directors, Trustees, and Key Employees | $40,000 | $40,000 | - | $80,000 |
| Payroll Taxes | $2,569 | $2,569 | - | $5,138 |
| Other Expenses | $2,801 | $265 | $0 | $3,066 |
| Conferences and Meetings | $2,990 | - | - | $2,990 |
| Fees for Services Other | $643 | $643 | - | $1,286 |
| Total Functional Expenses | $183,766 | $43,477 | $0 | $227,243 |
| Line Item | Amount |
|---|---|
| Professional Fundraising Fees | $0 |
“Did any officer, director, trustee or key employee have a family or business relationship with any other officer, director, trustee, or key employee? Yes, Michael Raymond (Executive Director) is married to Katia Luedtke (General Counsel).”
“Did the organization have members or stockholders? Yes, the organization has two classes of members: (1) Voting Members (individuals with Snyder-Robinson Syndrome, parents, siblings, caregivers, and carriers of the genetic mutation causing SRS; and (2) Associate Members (everyone else who supports our mission). There are no dues or fees for membership.”
“Did the organization have members... who had the power to elect or appoint one or more members of the governing body? Yes, Voting Members elect all of the Directors to the Board of Directors.”
“Are any of the governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? Yes, Voting Members must approve all changes to the Articles of Incorporation and By-laws.”
“This form was prepared by the Executive Director (who is a CPA). It was reviewed by the CFO.”
“Form 990, Part VI, Section C, Line 19 - These documents are available on our website at: https://snyder-robinson.org/about/governance-finance/”
“We received Employee Retention Tax Credits of $10,000 during the fiscal year. We are reporting these credits as Government Grants on Form 990, Part VIII, Line 1e.”
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/ActivitiesConductedPrtshpInd | 0 | 0 |
| IRS990/ActivityOrMissionDesc | 0 | We are a rare disease patient advocacy organization. Our mission is to support medical research that will lead to safe and effective treatments for individuals with Snyder-Robinson Syndrome and related disorders; and for related scientific and charitable purposes. |
| IRS990/AllOtherContributionsAmt | 0 | 270812 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | 1 |
| IRS990/BackupWthldComplianceInd | 0 | 0 |
| IRS990/BooksInCareOfDetail/PersonNm | 0 | Michael Raymond |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 7032030215 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 1443 Layman Street |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | McLean |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | VA |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 22101 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | 0 |
| IRS990/BusinessRlnWithFamMemInd | 0 | 0 |
| IRS990/BusinessRlnWithOrgMemInd | 0 | 0 |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 234542 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 288110 |
| IRS990/ChangeToOrgDocumentsInd | 0 | 0 |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/CollectionsOfArtInd | 0 | 0 |
| IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt | 0 | 40000 |
| IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt | 0 | 40000 |
| IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt | 0 | 80000 |
| IRS990/CompensationFromOtherSrcsInd | 0 | 0 |
| IRS990/CompensationProcessCEOInd | 0 | 0 |
| IRS990/CompensationProcessOtherInd | 0 | 0 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 2990 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 2990 |
| IRS990/ConflictOfInterestPolicyInd | 0 | 1 |
| IRS990/ConservationEasementsInd | 0 | 0 |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | 0 |
| IRS990/ContriRptFundraisingEventAmt | 0 | 0 |
| IRS990/CreditCounselingInd | 0 | 0 |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 280812 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 0 |
| IRS990/CYInvestmentIncomeAmt | 0 | 0 |
| IRS990/CYOtherExpensesAmt | 0 | 142105 |
| IRS990/CYOtherRevenueAmt | 0 | 0 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | 53569 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 85138 |
| IRS990/CYTotalExpensesAmt | 0 | 227243 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 0 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 280812 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | 1 |
| IRS990/DeductibleArtContributionInd | 0 | 0 |
| IRS990/DeductibleNonCashContriInd | 0 | 0 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | 0 |
| IRS990/Desc | 0 | Snyder-Robinson Syndrome Patient Registry and Natural History Study (ongoing): This IRB-approved study gathers medical data from SRS patients to help researchers to understand SRS and to develop treatments for SRS. This includes salary expense for our Director of Research and related expenses (i.e., payroll taxes and payroll service). Our expenses for the fiscal year also include software and related development costs to link our Natural History Study to the Spectrum Snyder-Robinson Syndrome Biorepository. |
| IRS990/DescribedInSection501c3Ind | 0 | 1 |
| IRS990/DisregardedEntityInd | 0 | 0 |
| IRS990/DocumentRetentionPolicyInd | 0 | 0 |
| IRS990/DonatedServicesAndUseFcltsAmt | 0 | 0 |
| IRS990/DonorAdvisedFundInd | 0 | 0 |
| IRS990/DonorRestrictionNetAssetsGrp/BOYAmt | 0 | 0 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 0 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | 0 |
| IRS990/ElectionOfBoardMembersInd | 0 | 1 |
| IRS990/EmployeeCnt | 0 | 2 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | 1 |
| IRS990/EngagedInExcessBenefitTransInd | 0 | 0 |
| IRS990/ExpenseAmt | 0 | 114363 |
| IRS990/FamilyOrBusinessRlnInd | 0 | 1 |
| IRS990/FederalGrantAuditRequiredInd | 0 | 0 |
| IRS990/FederatedCampaignsAmt | 0 | 0 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 643 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 643 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 1286 |
| IRS990/ForeignActivitiesInd | 0 | 0 |
| IRS990/ForeignFinancialAccountInd | 0 | 0 |
| IRS990/ForeignOfficeInd | 0 | 0 |
| IRS990/Form8282PropertyDisposedOfInd | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 0 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 1 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 20 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 20 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 4 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 9 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 10 | 1 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 11 | 1 |
| 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/KeyEmployeeInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/KeyEmployeeInd | 1 | 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 | 40000 |
| IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt | 1 | 40000 |
| 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/PersonNm | 0 | Cameron Hancock |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | Teri Koerner |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | Michael Raymond |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | Dr Mark Gallagher |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | Dr Mary Jo Kutler |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | Dr Anthony Pegg |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | Dr Robin Carlson |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | Dr Jeffrey Lindeman |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | Tom Dolan |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 9 | Katia Luedtke |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 10 | Frank Marchetti |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 11 | Christopher Abbott |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 0 | 40000 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 1 | 40000 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 2 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 3 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 4 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 5 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 6 | 0 |
| 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/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 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 8 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 9 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 10 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt | 11 | 0 |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 0 | Director of Business Development & Membership |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | Director of Research |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | Executive Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | Chairman, Board of Directors |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | Director |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 9 | General Counsel |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 10 | Chief Financial Officer |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 11 | Chief Information Officer |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | 0 |
| IRS990/FormationYr | 0 | 2014 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | 0 |
| IRS990/FSAuditedInd | 0 | 0 |
| IRS990/FundraisingActivitiesInd | 0 | 0 |
| IRS990/FundraisingAmt | 0 | 0 |
| IRS990/GainOrLossGrp/OtherAmt | 0 | 0 |
| IRS990/GainOrLossGrp/SecuritiesAmt | 0 | 0 |
| IRS990/GamingActivitiesInd | 0 | 0 |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 7 |
| IRS990/GovernmentGrantsAmt | 0 | 10000 |
| IRS990/GrantsToIndividualsInd | 0 | 0 |
| IRS990/GrantsToOrganizationsInd | 0 | 0 |
| IRS990/GrantToRelatedPersonInd | 0 | 0 |
| IRS990/GrossReceiptsAmt | 0 | 280812 |
| IRS990/GroupReturnForAffiliatesInd | 0 | 0 |
| IRS990/IncludeFIN48FootnoteInd | 0 | 0 |
| IRS990/IndependentAuditFinclStmtInd | 0 | 0 |
| IRS990/IndependentVotingMemberCnt | 0 | 7 |
| IRS990/IndivRcvdGreaterThan100KCnt | 0 | 0 |
| IRS990/IndoorTanningServicesInd | 0 | 0 |
| IRS990/InfoInScheduleOPartVIIIInd | 0 | X |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InsuranceGrp/TotalAmt | 0 | 0 |
| IRS990/InvestmentExpenseAmt | 0 | 0 |
| IRS990/InvestmentInJointVentureInd | 0 | 0 |
| IRS990/IRPDocumentCnt | 0 | 0 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | VA |
| IRS990/LoanOutstandingInd | 0 | 0 |
| IRS990/LobbyingActivitiesInd | 0 | 0 |
| IRS990/LocalChaptersInd | 0 | 0 |
| IRS990/MaterialDiversionOrMisuseInd | 0 | 0 |
| IRS990/MembershipDuesAmt | 0 | 0 |
| IRS990/MembersOrStockholdersInd | 0 | 1 |
| IRS990/MethodOfAccountingCashInd | 0 | X |
| IRS990/MinutesOfCommitteesInd | 0 | 1 |
| IRS990/MinutesOfGoverningBodyInd | 0 | 1 |
| IRS990/MissionDesc | 0 | We are a rare disease patient advocacy organization. Our mission is to support medical research that will lead to safe and effective treatments for individuals with Snyder-Robinson Syndrome ("SRS") and related disorders; and for related scientific and charitable purposes. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | 0 |
| IRS990/MoreThan5000KToOrgInd | 0 | 0 |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 234542 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 288110 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 0 |
| IRS990/NetUnrlzdGainsLossesInvstAmt | 0 | 0 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 234542 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 288110 |
| IRS990/NoncashContributionsAmt | 0 | 0 |
| IRS990/NondeductibleContributionsInd | 0 | 0 |
| IRS990/OfficerMailingAddressInd | 0 | 0 |
| IRS990/OperateHospitalInd | 0 | 0 |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherChangesInNetAssetsAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/Desc | 0 | Research to develop spermine prodrug (U. Central Florida) |
| IRS990/OtherExpensesGrp/Desc | 1 | Natural History Study & Biorepository Software |
| IRS990/OtherExpensesGrp/Desc | 2 | Digital Content - SRS |
| IRS990/OtherExpensesGrp/Desc | 3 | Miscellaneous |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 1 | 0 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 2 | 0 |
| IRS990/OtherExpensesGrp/FundraisingAmt | 3 | 0 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 1 | 0 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 2 | 0 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 3 | 265 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 60000 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 1 | 71151 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 2 | 3612 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 3 | 2801 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 60000 |
| IRS990/OtherExpensesGrp/TotalAmt | 1 | 71151 |
| IRS990/OtherExpensesGrp/TotalAmt | 2 | 3612 |
| IRS990/OtherExpensesGrp/TotalAmt | 3 | 3066 |
| IRS990/OtherRevenueTotalAmt | 0 | 0 |
| IRS990/OwnWebsiteInd | 0 | X |
| IRS990/PartialLiquidationInd | 0 | 0 |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt | 0 | 2569 |
| IRS990/PayrollTaxesGrp/ProgramServicesAmt | 0 | 2569 |
| IRS990/PayrollTaxesGrp/TotalAmt | 0 | 5138 |
| IRS990/PoliticalCampaignActyInd | 0 | 0 |
| IRS990/PrincipalOfficerNm | 0 | Michael Raymond |
| IRS990/PriorPeriodAdjustmentsAmt | 0 | -1 |
| IRS990/ProfessionalFundraisingInd | 0 | 0 |
| IRS990/ProgSrvcAccomActy2Grp/Desc | 0 | Education/Website: We maintain a website and create digital content to share information about SRS, including information for health care providers. Our website may be found at www.snyder-robinson.org. We also incurred membership expenses for the National Organization for Rare Disorders, the Canadian Organization for Rare Disorders, the Canadian Organisation for Rare Disorders, and IndoUSrare. |
| IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt | 0 | 3888 |
| IRS990/ProgSrvcAccomActy2Grp/RevenueAmt | 0 | 0 |
| IRS990/ProgSrvcAccomActy3Grp/Desc | 0 | Conferences/Meetings: We participate in relevant scientific conferences, including the Gordon Polyamine Conference, where the role of polyamines and polyamine-associated pathways are discussed. Genetic disorders of the polyamine pathway, including SRS, are also discussed. This category also video conferencing (ZOOM) expenses for patient family meetings. |
| IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt | 0 | 2990 |
| IRS990/ProgSrvcAccomActy3Grp/RevenueAmt | 0 | 0 |
| IRS990/ProgSrvcAccomActyOtherGrp/Desc | 0 | We provided $60,000 of funding for research to the University of Central Florida for development of a spermine prodrug, a novel compound that shows promise as a treatment for Snyder-Robinson Syndrome, and paid $2525 for additional research expenses. |
| IRS990/ProgSrvcAccomActyOtherGrp/ExpenseAmt | 0 | 62525 |
| IRS990/ProgSrvcAccomActyOtherGrp/RevenueAmt | 0 | 0 |
| IRS990/ProhibitedTaxShelterTransInd | 0 | 0 |
| IRS990/PYContributionsGrantsAmt | 0 | 243145 |
| IRS990/PYExcessBenefitTransInd | 0 | 0 |
| IRS990/PYGrantsAndSimilarPaidAmt | 0 | 11570 |
| IRS990/PYOtherExpensesAmt | 0 | 1045 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 216689 |
| IRS990/PYSalariesCompEmpBnftPaidAmt | 0 | 13841 |
| IRS990/PYTotalExpensesAmt | 0 | 26456 |
| IRS990/PYTotalRevenueAmt | 0 | 243145 |
| IRS990/QuidProQuoContributionsInd | 0 | 0 |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | 0 |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | 53569 |
| IRS990/RegularMonitoringEnfrcInd | 0 | 0 |
| IRS990/RelatedEntityInd | 0 | 0 |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | 0 |
| IRS990/RelatedOrganizationsAmt | 0 | 0 |
| IRS990/RentalIncomeOrLossGrp/PersonalAmt | 0 | 0 |
| IRS990/RentalIncomeOrLossGrp/RealAmt | 0 | 0 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | 0 |
| IRS990/ReportLandBuildingEquipmentInd | 0 | 0 |
| IRS990/ReportOtherAssetsInd | 0 | 0 |
| IRS990/ReportOtherLiabilitiesInd | 0 | 0 |
| IRS990/ReportProgramRelatedInvstInd | 0 | 0 |
| IRS990/RevenueAmt | 0 | 0 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearAmt | 0 | 7000 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus1YearAmt | 0 | 3200 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus2YearsAmt | 0 | 1500 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus3YearsAmt | 0 | 1590 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/CurrentTaxYearMinus4YearsAmt | 0 | 500 |
| IRS990ScheduleA/AmountsRcvdDsqlfyPersonGrp/TotalAmt | 0 | 13790 |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt | 0 | We received $10,000 in federal Employee Retention Tax Credits. The Employee Retention Credit is a fully refundable tax credit for employers equal to 50 percent of qualified wages (including allocable qualified health plan expenses) that Eligible Employers pay their employees. This Employee Retention Credit applies to qualified wages paid after March 12, 2020, and before January 1, 2021. |
| IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc | 0 | Schedule A, Part III, Line 12 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt | 0 | 270812 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt | 0 | 243145 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 21826 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 19473 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 7954 |
| IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt | 0 | 563210 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0 |
| IRS990ScheduleA/InvestmentIncomePYPct | 0 | 0 |
| IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearAmt | 0 | 10000 |
| IRS990ScheduleA/OtherIncome509Grp/TotalAmt | 0 | 10000 |
| IRS990ScheduleA/PubliclySupportedOrg509a2Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0.95850 |
| IRS990ScheduleA/PublicSupportPY509Pct | 0 | 0.9712 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 549420 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt | 0 | 7000 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt | 0 | 3200 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt | 0 | 1500 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt | 0 | 1590 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt | 0 | 500 |
| IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt | 0 | 13790 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind | 0 | X |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt | 0 | 270812 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt | 0 | 243145 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt | 0 | 21826 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt | 0 | 19473 |
| IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt | 0 | 7954 |
| IRS990ScheduleA/Total509Grp/TotalAmt | 0 | 563210 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt | 0 | 280812 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt | 0 | 243145 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt | 0 | 21826 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt | 0 | 19473 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt | 0 | 7954 |
| IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt | 0 | 573210 |
| IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorNum | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine1 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine2 | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode | 0 | RESTRICTED |
| IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt | 0 | RESTRICTED |
| IRS990/ScheduleBRequiredInd | 0 | 1 |
| IRS990/ScheduleJRequiredInd | 0 | 0 |
| IRS990/ScheduleORequiredInd | 0 | 1 |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | Did any officer, director, trustee or key employee have a family or business relationship with any other officer, director, trustee, or key employee? Yes, Michael Raymond (Executive Director) is married to Katia Luedtke (General Counsel). |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | Did the organization have members or stockholders? Yes, the organization has two classes of members: (1) Voting Members (individuals with Snyder-Robinson Syndrome, parents, siblings, caregivers, and carriers of the genetic mutation causing SRS; and (2) Associate Members (everyone else who supports our mission). There are no dues or fees for membership. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | Did the organization have members... who had the power to elect or appoint one or more members of the governing body? Yes, Voting Members elect all of the Directors to the Board of Directors. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | Are any of the governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? Yes, Voting Members must approve all changes to the Articles of Incorporation and By-laws. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | This form was prepared by the Executive Director (who is a CPA). It was reviewed by the CFO. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | Form 990, Part VI, Section C, Line 19 - These documents are available on our website at: https://snyder-robinson.org/about/governance-finance/ |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | We received Employee Retention Tax Credits of $10,000 during the fiscal year. We are reporting these credits as Government Grants on Form 990, Part VIII, Line 1e. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Form 990, Part VI, Section A, Line 2 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Form 990, Part VI, Section A, Line 6 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Form 990, Part VI, Section A, Line 7a |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Form 990, Part VI, Section A, Line 7b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | Form 990, Part VI, Section B, Line 11b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | Form 990, Part VI, Section C, Line 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | Form 990, Part VIII, Line 1e |
| IRS990/SchoolOperatingInd | 0 | 0 |
| IRS990/SignificantChangeInd | 0 | 0 |
| IRS990/SignificantNewProgramSrvcInd | 0 | 0 |
| IRS990/SubjectToExcsTaxNetInvstIncInd | 0 | 0 |
| IRS990/SubjectToProxyTaxInd | 0 | 0 |
| IRS990/SubjToTaxRmnrtnExPrchtPymtInd | 0 | 0 |
| IRS990/TaxablePartyNotificationInd | 0 | 0 |
| IRS990/TaxExemptBondsInd | 0 | 0 |
| IRS990/TerminateOperationsInd | 0 | 0 |
| IRS990/TotalAssetsBOYAmt | 0 | 234542 |
| IRS990/TotalAssetsEOYAmt | 0 | 288110 |
| IRS990/TotalAssetsGrp/BOYAmt | 0 | 234542 |
| IRS990/TotalAssetsGrp/EOYAmt | 0 | 288110 |
| IRS990/TotalCompGreaterThan150KInd | 0 | 0 |
| IRS990/TotalContributionsAmt | 0 | 280812 |
| IRS990/TotalEmployeeCnt | 0 | 2 |
| IRS990/TotalFunctionalExpensesGrp/FundraisingAmt | 0 | 0 |
| IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt | 0 | 43477 |
| IRS990/TotalFunctionalExpensesGrp/ProgramServicesAmt | 0 | 183766 |
| IRS990/TotalFunctionalExpensesGrp/TotalAmt | 0 | 227243 |
| IRS990/TotalGrossUBIAmt | 0 | 0 |
| IRS990/TotalLiabilitiesBOYAmt | 0 | 0 |
| IRS990/TotalLiabilitiesEOYAmt | 0 | 0 |
| IRS990/TotalLiabilitiesGrp/BOYAmt | 0 | 0 |
| IRS990/TotalLiabilitiesGrp/EOYAmt | 0 | 0 |
| IRS990/TotalNetAssetsFundBalanceGrp/BOYAmt | 0 | 234542 |
| IRS990/TotalNetAssetsFundBalanceGrp/EOYAmt | 0 | 288110 |
| IRS990/TotalOtherCompensationAmt | 0 | 80000 |
| IRS990/TotalOtherProgSrvcExpenseAmt | 0 | 62525 |
| IRS990/TotalOtherProgSrvcGrantAmt | 0 | 0 |
| IRS990/TotalOtherProgSrvcRevenueAmt | 0 | 0 |
| IRS990/TotalProgramServiceExpensesAmt | 0 | 183766 |
| IRS990/TotalProgramServiceRevenueAmt | 0 | 0 |
| IRS990/TotalReportableCompFromOrgAmt | 0 | 80000 |
| IRS990/TotalRevenueGrp/ExclusionAmt | 0 | 0 |
| IRS990/TotalRevenueGrp/RelatedOrExemptFuncIncomeAmt | 0 | 0 |
| IRS990/TotalRevenueGrp/TotalRevenueColumnAmt | 0 | 280812 |
| IRS990/TotalRevenueGrp/UnrelatedBusinessRevenueAmt | 0 | 0 |
| IRS990/TotalVolunteersCnt | 0 | 15 |
| IRS990/TotLiabNetAssetsFundBalanceGrp/BOYAmt | 0 | 234542 |
| IRS990/TotLiabNetAssetsFundBalanceGrp/EOYAmt | 0 | 288110 |
| IRS990/TotReportableCompRltdOrgAmt | 0 | 0 |
| IRS990/TrnsfrExmptNonChrtblRltdOrgInd | 0 | 0 |
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Displayed year
2021 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.