Liabilities / Assets
50th percentile
Higher debt load relative to assets than 50% of similar nonprofits.
990 • Fiscal year 2022 • EIN 26-3223661
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
50th percentile
Higher debt load relative to assets than 50% of similar nonprofits.
Liabilities / Revenue
64th percentile
Higher debt load relative to revenue than 64% of similar nonprofits.
Net Margin
35th percentile
Higher net margin than 35% of similar nonprofits.
Top Officer Pay
50th percentile
Higher top officer pay than 50% of similar nonprofits.
Top officer pay equals 4.7% of source-year revenue.
Asset Growth
29th percentile
Faster asset growth than 29% of similar nonprofits.
Revenue Growth
76th percentile
Faster revenue growth than 76% of similar nonprofits.
Assets
Down$3,581,583
Down $191,973 (-5.1%) from 2021
Net Assets
Down$3,361,567
Down $403,208 (-11%) from 2021
Liabilities
Up$220,016
Up $211,235 (+2406%) from 2021
Revenue
Up$1,219,815
Up $311,370 (+34%) from 2021
Expenses
Up$1,220,690
Up $555,347 (+83%) from 2021
Net Income
Down-$875
Down $243,977 (-100%) from 2021
To eradicate juvenile batten disease by raising awareness and funds for research to find a treatment or cure.
| Line | Beginning | End | Change |
|---|---|---|---|
| Assets | |||
| Investments Other Securities | $2,518,000 | $2,518,000 | → $0 |
| Cash and Non-Interest-Bearing Accounts | $174,475 | $687,287 | ▲ $512,812 |
| Savings and Temporary Cash Investments | $908,308 | $185,641 | ▼ $722,667 |
| Pledges and Grants Receivable | $151,991 | $153,245 | ▲ $1,254 |
| Prepaid Expenses and Deferred Charges | $20,782 | $36,210 | ▲ $15,428 |
| Accounts Receivable | $0 | $1,200 | ▲ $1,200 |
| Total Assets | $3,773,556 | $3,581,583 | ▼ $191,973 |
| Liabilities | |||
| Accounts Payable and Accrued Expenses | $8,781 | $158,881 | ▲ $150,100 |
| Deferred Revenue | $0 | $61,135 | ▲ $61,135 |
| Total Liabilities | $8,781 | $220,016 | ▲ $211,235 |
| Net Assets / Fund Balance | |||
| Net Assets Without Donor Restrictions | $3,612,784 | $3,208,322 | ▼ $404,462 |
| Net Assets With Donor Restrictions | $151,991 | $153,245 | ▲ $1,254 |
| Total Net Assets Fund Balance | $3,764,775 | $3,361,567 | ▼ $403,208 |
| Total Liabilities and Net Assets / Fund Balance | $3,773,556 | $3,581,583 | ▼ $191,973 |
| Asset | Book Value | Depreciation | Basis |
|---|---|---|---|
| Closely Held Equity Interests | $2,518,000 | - | - |
| Name | Title | Full / Part Time | Base | Total |
|---|---|---|---|---|
| Danielle Kerkovich | Scientific Officer | FT | $57,237 | $57,237 |
| Name | Title |
|---|---|
| T Craig Benson | Board Chair |
| Mary Beth Kiser | President/CEO and Secretary |
| Caroline Goodner | Director |
| Jeff Hunt | Director |
| Sabrina Brown | Director |
| Steven Silber Md | Director |
| Wayne Herndon | Director |
| Will Murphy | Director |
| Contractor | Services | Location | Compensation |
|---|---|---|---|
| Strategic Association Management | Management | 3305 STECK AVE STE 200, Austin, TX 78757 | $210,000 |
| - | Research | 55 FRUIT ST, Boston, MA 02114 | $164,687 |
| Engage Health | Research | 3265 LEXINGTON AVE S, Eagan, MN 55121 | $144,300 |
| Line Item | Amount |
|---|---|
| Other Expenses | $1,195,690 |
| Total Fundraising Expense | $46,128 |
| Grants and Similar Amounts Paid | $25,000 |
| Professional Fundraising Fees | $0 |
| Salaries, Compensation, and Employee Benefits | $0 |
| Line Item | Program | Management | Fundraising | Total |
|---|---|---|---|---|
| Fees for Services Other | $704,895 | $0 | $0 | $704,895 |
| Fees for Services Management | $85,118 | $83,915 | $41,862 | $210,895 |
| Other Expenses | $0 | $101,443 | $0 | $101,443 |
| Fees for Services Legal | $81,574 | $1,819 | $0 | $83,393 |
| Occupancy | $28,051 | $3,480 | $0 | $31,531 |
| Conferences and Meetings | $22,732 | $3,298 | $0 | $26,030 |
| Grants to Domestic Orgs | $25,000 | - | - | $25,000 |
| Office Expenses | $12 | $18,138 | $4,266 | $22,416 |
| Fees for Services Accounting | $0 | $13,050 | $0 | $13,050 |
| Travel | $1,246 | $0 | $0 | $1,246 |
| Insurance | $0 | $791 | $0 | $791 |
| Total Functional Expenses | $948,628 | $225,934 | $46,128 | $1,220,690 |
| Line Item | Amount |
|---|---|
| Total Expenses per Audited Statements | $1,256,157 |
| Expenses per Audited Statements | $1,220,690 |
| Total Expenses per Form 990 | $1,220,690 |
| Expenses Not Reported on Form 990 | $35,467 |
| Recipient | Location | Category | Purpose | Amount |
|---|---|---|---|---|
| Care Beyond Diagnosis | Garner, NC | 501(c)3 | Grant | $25,000 |
| Line Item | Amount |
|---|---|
| Fundraising Gross Income | $10,969 |
| Fundraising Direct Expenses | $6,195 |
| Professional Fundraising Fees | $0 |
“The form 990 is provided to all board members and officers for review before filing.”
“Each director and officer is required to annually sign a statement affirming that they have received a copy of the bylaws containing the conflict of interest policy, have read and understand the policy, and have agreed to comply with the policy.”
“The president/ceo's compensation is reviewed and approved by the board of directors.”
“Other employee compensation is reviewed with comparable sources and approved by the board of directors.”
“Information available upon request.”
“Line 9 - OTHER CHANGES IN NET ASSETS - INCOME ON LLC INTEREST $368,155.”
“Research contracts 704895. 704895. 0. 0.”
“Income on llc interest not included in audit.”
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/BOYAmt | 0 | 8781 |
| IRS990/AccountsPayableAccrExpnssGrp/EOYAmt | 0 | 158881 |
| IRS990/AccountsReceivableGrp/BOYAmt | 0 | 0 |
| IRS990/AccountsReceivableGrp/EOYAmt | 0 | 1200 |
| IRS990/ActivitiesConductedPrtshpInd | 0 | false |
| IRS990/ActivityOrMissionDesc | 0 | TO ERADICATE JUVENILE BATTEN DISEASE BY RAISING AWARENESS AND FUNDS FOR RESEARCH TO FIND A TREATMENT OR CURE. |
| IRS990/AllOtherContributionsAmt | 0 | 825881 |
| IRS990/AnnualDisclosureCoveredPrsnInd | 0 | true |
| IRS990/AuditCommitteeInd | 0 | true |
| IRS990/BackupWthldComplianceInd | 0 | true |
| IRS990/BooksInCareOfDetail/BusinessName/BusinessNameLine1Txt | 0 | STRATEGIC ASSOCIATION MANAGEMENT |
| IRS990/BooksInCareOfDetail/PhoneNum | 0 | 5122752600 |
| IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt | 0 | 3305 STECK AVE STE 200 |
| IRS990/BooksInCareOfDetail/USAddress/CityNm | 0 | AUSTIN |
| IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd | 0 | TX |
| IRS990/BooksInCareOfDetail/USAddress/ZIPCd | 0 | 78757 |
| IRS990/BusinessRlnWith35CtrlEntInd | 0 | false |
| IRS990/BusinessRlnWithFamMemInd | 0 | false |
| IRS990/BusinessRlnWithOrgMemInd | 0 | false |
| IRS990/CashNonInterestBearingGrp/BOYAmt | 0 | 174475 |
| IRS990/CashNonInterestBearingGrp/EOYAmt | 0 | 687287 |
| IRS990/ChangeToOrgDocumentsInd | 0 | false |
| IRS990/CntrctRcvdGreaterThan100KCnt | 0 | 3 |
| IRS990/CollectionsOfArtInd | 0 | false |
| IRS990/CompensationFromOtherSrcsInd | 0 | false |
| IRS990/CompensationProcessCEOInd | 0 | true |
| IRS990/CompensationProcessOtherInd | 0 | true |
| IRS990/ConferencesMeetingsGrp/FundraisingAmt | 0 | 0 |
| IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt | 0 | 3298 |
| IRS990/ConferencesMeetingsGrp/ProgramServicesAmt | 0 | 22732 |
| IRS990/ConferencesMeetingsGrp/TotalAmt | 0 | 26030 |
| IRS990/ConflictOfInterestPolicyInd | 0 | true |
| IRS990/ConservationEasementsInd | 0 | false |
| IRS990/ConsolidatedAuditFinclStmtInd | 0 | false |
| IRS990/ContractorCompensationGrp/CompensationAmt | 0 | 210000 |
| IRS990/ContractorCompensationGrp/CompensationAmt | 1 | 144300 |
| IRS990/ContractorCompensationGrp/CompensationAmt | 2 | 164687 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 0 | 3305 STECK AVE STE 200 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 1 | 3265 LEXINGTON AVE S |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/AddressLine1Txt | 2 | 55 FRUIT ST |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 0 | AUSTIN |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 1 | EAGAN |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/CityNm | 2 | BOSTON |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 0 | TX |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 1 | MN |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/StateAbbreviationCd | 2 | MA |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 0 | 78757 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 1 | 55121 |
| IRS990/ContractorCompensationGrp/ContractorAddress/USAddress/ZIPCd | 2 | 02114 |
| IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt | 0 | STRATEGIC ASSOCIATION MANAGEMENT |
| IRS990/ContractorCompensationGrp/ContractorName/BusinessName/BusinessNameLine1Txt | 1 | ENGAGE HEALTH |
| IRS990/ContractorCompensationGrp/ContractorName/PersonNm | 0 | MASS GENERAL HOSPITAL |
| IRS990/ContractorCompensationGrp/ServicesDesc | 0 | MANAGEMENT |
| IRS990/ContractorCompensationGrp/ServicesDesc | 1 | RESEARCH |
| IRS990/ContractorCompensationGrp/ServicesDesc | 2 | RESEARCH |
| IRS990/CreditCounselingInd | 0 | false |
| IRS990/CYBenefitsPaidToMembersAmt | 0 | 0 |
| IRS990/CYContributionsGrantsAmt | 0 | 825881 |
| IRS990/CYGrantsAndSimilarPaidAmt | 0 | 25000 |
| IRS990/CYInvestmentIncomeAmt | 0 | 5 |
| IRS990/CYOtherExpensesAmt | 0 | 1195690 |
| IRS990/CYOtherRevenueAmt | 0 | 393929 |
| IRS990/CYProgramServiceRevenueAmt | 0 | 0 |
| IRS990/CYRevenuesLessExpensesAmt | 0 | -875 |
| IRS990/CYSalariesCompEmpBnftPaidAmt | 0 | 0 |
| IRS990/CYTotalExpensesAmt | 0 | 1220690 |
| IRS990/CYTotalFundraisingExpenseAmt | 0 | 46128 |
| IRS990/CYTotalProfFndrsngExpnsAmt | 0 | 0 |
| IRS990/CYTotalRevenueAmt | 0 | 1219815 |
| IRS990/DecisionsSubjectToApprovaInd | 0 | false |
| IRS990/DeductibleArtContributionInd | 0 | false |
| IRS990/DeductibleNonCashContriInd | 0 | false |
| IRS990/DeferredRevenueGrp/BOYAmt | 0 | 0 |
| IRS990/DeferredRevenueGrp/EOYAmt | 0 | 61135 |
| IRS990/DelegationOfMgmtDutiesInd | 0 | false |
| IRS990/Desc | 0 | TO ACCELERATE THE DISCOVERY AND DEVELOPMENT OF MEDICINES TO PREVENT, TREAT AND CURE JUVENILE BATTEN DISEASE. THIS IS DONE THROUGH GRANTING FUNDS AND CONTRACTING SERVICES WITH ACADEMIC INSTITUTIONS, BIOTECHNOLOGY COMPANIES, AND OTHER ORGANIZATIONS WITH THE CAPACITY TO ASSIST IN ACHIEVING OUR GOALS. THE FOUNDATION ALSO SPEARHEADS THE DEVELOPMENT OF THINK-TANK CONFERENCES AND UNIQUE PARTNERSHIPS TO DRIVE JUVENILE BATTEN DISEASE RESEARCH. |
| IRS990/DescribedInSection501c3Ind | 0 | true |
| IRS990/DisregardedEntityInd | 0 | false |
| IRS990/DocumentRetentionPolicyInd | 0 | true |
| IRS990/DonorAdvisedFundInd | 0 | false |
| IRS990/DonorRestrictionNetAssetsGrp/BOYAmt | 0 | 151991 |
| IRS990/DonorRestrictionNetAssetsGrp/EOYAmt | 0 | 153245 |
| IRS990/DonorRstrOrQuasiEndowmentsInd | 0 | false |
| IRS990/ElectionOfBoardMembersInd | 0 | false |
| IRS990/EmployeeCnt | 0 | 0 |
| IRS990/EmploymentTaxReturnsFiledInd | 0 | true |
| IRS990/EngagedInExcessBenefitTransInd | 0 | false |
| IRS990/ExpenseAmt | 0 | 948628 |
| IRS990/FamilyOrBusinessRlnInd | 0 | false |
| IRS990/FederalGrantAuditRequiredInd | 0 | false |
| IRS990/FeesForServicesAccountingGrp/FundraisingAmt | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt | 0 | 13050 |
| IRS990/FeesForServicesAccountingGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/FeesForServicesAccountingGrp/TotalAmt | 0 | 13050 |
| IRS990/FeesForServicesLegalGrp/FundraisingAmt | 0 | 0 |
| IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt | 0 | 1819 |
| IRS990/FeesForServicesLegalGrp/ProgramServicesAmt | 0 | 81574 |
| IRS990/FeesForServicesLegalGrp/TotalAmt | 0 | 83393 |
| IRS990/FeesForServicesManagementGrp/FundraisingAmt | 0 | 41862 |
| IRS990/FeesForServicesManagementGrp/ManagementAndGeneralAmt | 0 | 83915 |
| IRS990/FeesForServicesManagementGrp/ProgramServicesAmt | 0 | 85118 |
| IRS990/FeesForServicesManagementGrp/TotalAmt | 0 | 210895 |
| IRS990/FeesForServicesOtherGrp/FundraisingAmt | 0 | 0 |
| IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt | 0 | 0 |
| IRS990/FeesForServicesOtherGrp/ProgramServicesAmt | 0 | 704895 |
| IRS990/FeesForServicesOtherGrp/TotalAmt | 0 | 704895 |
| IRS990/ForeignActivitiesInd | 0 | false |
| IRS990/ForeignFinancialAccountInd | 0 | false |
| IRS990/ForeignOfficeInd | 0 | false |
| IRS990/Form8282PropertyDisposedOfInd | 0 | false |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 0 | 20.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 1 | 40.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 2 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 3 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 4 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 5 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 6 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 7 | 4.00 |
| IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt | 8 | 40.00 |
| 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/IndividualTrusteeOrDirectorInd | 6 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 0 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 1 | X |
| IRS990/Form990PartVIISectionAGrp/OfficerInd | 2 | 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/PersonNm | 0 | T CRAIG BENSON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 1 | MARY BETH KISER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 2 | JEFF HUNT |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 3 | SABRINA BROWN |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 4 | WAYNE HERNDON |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 5 | WILL MURPHY |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 6 | CAROLINE GOODNER |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 7 | STEVEN SILBER MD |
| IRS990/Form990PartVIISectionAGrp/PersonNm | 8 | DANIELLE KERKOVICH |
| 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/ReportableCompFromOrgAmt | 6 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 7 | 0 |
| IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt | 8 | 57237 |
| 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/TitleTxt | 0 | BOARD CHAIR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 1 | PRESIDENT/CEO AND SECRETARY |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 2 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 3 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 4 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 5 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 6 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 7 | DIRECTOR |
| IRS990/Form990PartVIISectionAGrp/TitleTxt | 8 | SCIENTIFIC OFFICER |
| IRS990/Form990ProvidedToGvrnBodyInd | 0 | true |
| IRS990/Form990TFiledInd | 0 | true |
| IRS990/FormationYr | 0 | 2008 |
| IRS990/FormerOfcrEmployeesListedInd | 0 | false |
| IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd | 0 | X |
| IRS990/FSAuditedInd | 0 | true |
| IRS990/FundraisingActivitiesInd | 0 | false |
| IRS990/FundraisingDirectExpensesAmt | 0 | 6195 |
| IRS990/FundraisingGrossIncomeAmt | 0 | 10969 |
| IRS990/GamingActivitiesInd | 0 | false |
| IRS990/GoverningBodyVotingMembersCnt | 0 | 7 |
| IRS990/GrantAmt | 0 | 25000 |
| IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt | 0 | 25000 |
| IRS990/GrantsToDomesticOrgsGrp/TotalAmt | 0 | 25000 |
| IRS990/GrantsToIndividualsInd | 0 | false |
| IRS990/GrantsToOrganizationsInd | 0 | true |
| IRS990/GrantToRelatedPersonInd | 0 | false |
| IRS990/GrossReceiptsAmt | 0 | 1226010 |
| IRS990/GrossRentsGrp/RealAmt | 0 | 21000 |
| IRS990/GroupReturnForAffiliatesInd | 0 | false |
| IRS990/IncludeFIN48FootnoteInd | 0 | false |
| IRS990/IndependentAuditFinclStmtInd | 0 | true |
| IRS990/IndependentVotingMemberCnt | 0 | 7 |
| IRS990/IndoorTanningServicesInd | 0 | false |
| IRS990/InfoInScheduleOPartVIInd | 0 | X |
| IRS990/InfoInScheduleOPartXIInd | 0 | X |
| IRS990/InsuranceGrp/FundraisingAmt | 0 | 0 |
| IRS990/InsuranceGrp/ManagementAndGeneralAmt | 0 | 791 |
| IRS990/InsuranceGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/InsuranceGrp/TotalAmt | 0 | 791 |
| IRS990/InvestmentIncomeGrp/ExclusionAmt | 0 | 5 |
| IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt | 0 | 5 |
| IRS990/InvestmentIncomeGrp/UnrelatedBusinessRevenueAmt | 0 | 0 |
| IRS990/InvestmentInJointVentureInd | 0 | false |
| IRS990/InvestmentsOtherSecuritiesGrp/BOYAmt | 0 | 2518000 |
| IRS990/InvestmentsOtherSecuritiesGrp/EOYAmt | 0 | 2518000 |
| IRS990/IRPDocumentCnt | 0 | 6 |
| IRS990/IRPDocumentW2GCnt | 0 | 0 |
| IRS990/LegalDomicileStateCd | 0 | TX |
| 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 ERADICATE JUVENILE BATTEN DISEASE BY RAISING AWARENESS AND FUNDS FOR RESEARCH TO FIND A TREATMENT OR CURE. |
| IRS990/MoreThan5000KToIndividualsInd | 0 | false |
| IRS990/MoreThan5000KToOrgInd | 0 | false |
| IRS990/NetAssetsOrFundBalancesBOYAmt | 0 | 3764775 |
| IRS990/NetAssetsOrFundBalancesEOYAmt | 0 | 3361567 |
| IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt | 0 | 4774 |
| IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt | 0 | 4774 |
| IRS990/NetIncmFromFundraisingEvtGrp/UnrelatedBusinessRevenueAmt | 0 | 0 |
| IRS990/NetRentalIncomeOrLossGrp/ExclusionAmt | 0 | 21000 |
| IRS990/NetRentalIncomeOrLossGrp/TotalRevenueColumnAmt | 0 | 21000 |
| IRS990/NetUnrelatedBusTxblIncmAmt | 0 | 367155 |
| IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt | 0 | 3612784 |
| IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt | 0 | 3208322 |
| IRS990/NondeductibleContributionsInd | 0 | false |
| IRS990/OccupancyGrp/FundraisingAmt | 0 | 0 |
| IRS990/OccupancyGrp/ManagementAndGeneralAmt | 0 | 3480 |
| IRS990/OccupancyGrp/ProgramServicesAmt | 0 | 28051 |
| IRS990/OccupancyGrp/TotalAmt | 0 | 31531 |
| IRS990/OfficeExpensesGrp/FundraisingAmt | 0 | 4266 |
| IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt | 0 | 18138 |
| IRS990/OfficeExpensesGrp/ProgramServicesAmt | 0 | 12 |
| IRS990/OfficeExpensesGrp/TotalAmt | 0 | 22416 |
| IRS990/OfficerMailingAddressInd | 0 | false |
| IRS990/OperateHospitalInd | 0 | false |
| IRS990/Organization501c3Ind | 0 | X |
| IRS990/OrganizationFollowsFASB117Ind | 0 | X |
| IRS990/OtherChangesInNetAssetsAmt | 0 | -368155 |
| IRS990/OtherExpensesGrp/Desc | 0 | INCOME TAX |
| IRS990/OtherExpensesGrp/FundraisingAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/ManagementAndGeneralAmt | 0 | 101443 |
| IRS990/OtherExpensesGrp/ProgramServicesAmt | 0 | 0 |
| IRS990/OtherExpensesGrp/TotalAmt | 0 | 101443 |
| IRS990/OtherRevenueMiscGrp/BusinessCd | 0 | 812210 |
| IRS990/OtherRevenueMiscGrp/Desc | 0 | NET INCOME (LOSS) FROM LLC INTERESTS |
| IRS990/OtherRevenueMiscGrp/ExclusionAmt | 0 | 0 |
| IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt | 0 | 0 |
| IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt | 0 | 368155 |
| IRS990/OtherRevenueMiscGrp/UnrelatedBusinessRevenueAmt | 0 | 368155 |
| IRS990/OtherRevenueTotalAmt | 0 | 368155 |
| IRS990/PartialLiquidationInd | 0 | false |
| IRS990/PayPremiumsPrsnlBnftCntrctInd | 0 | false |
| IRS990/PledgesAndGrantsReceivableGrp/BOYAmt | 0 | 151991 |
| IRS990/PledgesAndGrantsReceivableGrp/EOYAmt | 0 | 153245 |
| IRS990/PoliticalCampaignActyInd | 0 | false |
| IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt | 0 | 20782 |
| IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt | 0 | 36210 |
| IRS990/PrincipalOfficerNm | 0 | MARY BETH KISER |
| IRS990/PriorPeriodAdjustmentsAmt | 0 | -34178 |
| IRS990/ProfessionalFundraisingInd | 0 | false |
| IRS990/ProhibitedTaxShelterTransInd | 0 | false |
| IRS990/PYContributionsGrantsAmt | 0 | 715252 |
| IRS990/PYExcessBenefitTransInd | 0 | false |
| IRS990/PYInvestmentIncomeAmt | 0 | 58 |
| IRS990/PYOtherExpensesAmt | 0 | 665343 |
| IRS990/PYOtherRevenueAmt | 0 | 193135 |
| IRS990/PYRevenuesLessExpensesAmt | 0 | 243102 |
| IRS990/PYTotalExpensesAmt | 0 | 665343 |
| IRS990/PYTotalRevenueAmt | 0 | 908445 |
| IRS990/QuidProQuoContributionsInd | 0 | true |
| IRS990/QuidProQuoContriDisclInd | 0 | true |
| IRS990/RcvFndsToPayPrsnlBnftCntrctInd | 0 | false |
| IRS990/ReconcilationRevenueExpnssAmt | 0 | -875 |
| IRS990/RegularMonitoringEnfrcInd | 0 | true |
| IRS990/RelatedEntityInd | 0 | false |
| IRS990/RelatedOrganizationCtrlEntInd | 0 | false |
| IRS990/RentalIncomeOrLossGrp/RealAmt | 0 | 21000 |
| IRS990/ReportInvestmentsOtherSecInd | 0 | true |
| IRS990/ReportLandBuildingEquipmentInd | 0 | false |
| IRS990/ReportOtherAssetsInd | 0 | false |
| IRS990/ReportOtherLiabilitiesInd | 0 | false |
| IRS990/ReportProgramRelatedInvstInd | 0 | false |
| IRS990/RevenueAmt | 0 | 0 |
| IRS990/SavingsAndTempCashInvstGrp/BOYAmt | 0 | 908308 |
| IRS990/SavingsAndTempCashInvstGrp/EOYAmt | 0 | 185641 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt | 0 | 825881 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt | 0 | 715251 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 1640342 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 2128850 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 1548777 |
| IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt | 0 | 6859101 |
| IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt | 0 | 21005 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt | 0 | 58 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 3471 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 4083 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 35 |
| IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt | 0 | 28652 |
| IRS990ScheduleA/InvestmentIncomeCYPct | 0 | 0 |
| IRS990ScheduleA/OtherIncome170Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/OtherSupportSumAmt | 0 | 0 |
| IRS990ScheduleA/PublicOrganization170Ind | 0 | X |
| IRS990ScheduleA/PublicSupportCY170Pct | 0 | 0.80510 |
| IRS990ScheduleA/PublicSupportCY509Pct | 0 | 0 |
| IRS990ScheduleA/PublicSupportPY170Pct | 0 | 0.76980 |
| IRS990ScheduleA/PublicSupportTotal170Amt | 0 | 6604287 |
| IRS990ScheduleA/PublicSupportTotal509Amt | 0 | 0 |
| IRS990ScheduleA/SubstantialContributorsTotAmt | 0 | 254814 |
| IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt | 0 | 0 |
| IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind | 0 | X |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt | 0 | 825881 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt | 0 | 715251 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 1640342 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 2128850 |
| IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 1548777 |
| IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt | 0 | 6859101 |
| IRS990ScheduleA/TotalSupportAmt | 0 | 8203099 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt | 0 | 10969 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus1YearAmt | 0 | 27413 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus2YearsAmt | 0 | 317487 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus3YearsAmt | 0 | 449223 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearMinus4YearsAmt | 0 | 510254 |
| IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt | 0 | 1315346 |
| 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 | true |
| IRS990ScheduleD/CloselyHeldEquityInterestsGrp/BookValueAmt | 0 | 2518000 |
| IRS990ScheduleD/CloselyHeldEquityInterestsGrp/MethodValuationCd | 0 | F |
| IRS990ScheduleD/DonatedServicesAndUseFcltsAmt | 0 | 35467 |
| IRS990ScheduleD/DonatedServicesUseFcltsAmt | 0 | 35467 |
| IRS990ScheduleD/ExpensesNotReportedAmt | 0 | 35467 |
| IRS990ScheduleD/ExpensesSubtotalAmt | 0 | 1220690 |
| IRS990ScheduleD/OtherRevenuesNotIncludedAmt | 0 | 368155 |
| IRS990ScheduleD/RevenueNotReportedAmt | 0 | 35467 |
| IRS990ScheduleD/RevenueNotReportedFinclStmtAmt | 0 | 368155 |
| IRS990ScheduleD/RevenueSubtotalAmt | 0 | 851660 |
| IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt | 0 | INCOME ON LLC INTEREST NOT INCLUDED IN AUDIT. |
| IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Pt XI, Line 4b |
| IRS990ScheduleD/TotalBookValueSecuritiesAmt | 0 | 2518000 |
| IRS990ScheduleD/TotalExpensesPerForm990Amt | 0 | 1220690 |
| IRS990ScheduleD/TotalRevenuePerForm990Amt | 0 | 1219815 |
| IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt | 0 | 887127 |
| IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt | 0 | 1256157 |
| IRS990ScheduleI/GrantRecordsMaintainedInd | 0 | true |
| IRS990ScheduleI/RecipientTable/CashGrantAmt | 0 | 25000 |
| IRS990ScheduleI/RecipientTable/IRCSectionDesc | 0 | 501(C)3 |
| IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt | 0 | GRANT |
| IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt | 0 | CARE BEYOND DIAGNOSIS |
| IRS990ScheduleI/RecipientTable/RecipientEIN | 0 | 384040391 |
| IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt | 0 | 71 KINSALE CT |
| IRS990ScheduleI/RecipientTable/USAddress/CityNm | 0 | GARNER |
| IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd | 0 | NC |
| IRS990ScheduleI/RecipientTable/USAddress/ZIPCd | 0 | 27529 |
| IRS990ScheduleI/Total501c3OrgCnt | 0 | 1 |
| IRS990ScheduleI/TotalOtherOrgCnt | 0 | 0 |
| IRS990/ScheduleJRequiredInd | 0 | false |
| IRS990/ScheduleORequiredInd | 0 | true |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 0 | THE FORM 990 IS PROVIDED TO ALL BOARD MEMBERS AND OFFICERS FOR REVIEW BEFORE FILING. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 1 | EACH DIRECTOR AND OFFICER IS REQUIRED TO ANNUALLY SIGN A STATEMENT AFFIRMING THAT THEY HAVE RECEIVED A COPY OF THE BYLAWS CONTAINING THE CONFLICT OF INTEREST POLICY, HAVE READ AND UNDERSTAND THE POLICY, AND HAVE AGREED TO COMPLY WITH THE POLICY. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 2 | THE PRESIDENT/CEO'S COMPENSATION IS REVIEWED AND APPROVED BY THE BOARD OF DIRECTORS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 3 | OTHER EMPLOYEE COMPENSATION IS REVIEWED WITH COMPARABLE SOURCES AND APPROVED BY THE BOARD OF DIRECTORS. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 4 | INFORMATION AVAILABLE UPON REQUEST. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 5 | Line 9 - OTHER CHANGES IN NET ASSETS - INCOME ON LLC INTEREST $368,155. |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 6 | RESEARCH CONTRACTS 704895. 704895. 0. 0. |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 0 | Pt VI, Line 11b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 1 | Pt VI, Line 12c |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 2 | Pt VI, Line 15a |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 3 | Pt VI, Line 15b |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 4 | Pt VI, Line 19 |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 5 | Pt XI |
| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 6 | Form 990, Part IX, Line 11g |
| IRS990/SchoolOperatingInd | 0 | false |
| IRS990/SignificantChangeInd | 0 | false |
| IRS990/SignificantNewProgramSrvcInd | 0 | false |
| IRS990/SubjectToExcsTaxNetInvstIncInd | 0 | false |
| IRS990/SubjectToProxyTaxInd | 0 | false |
| IRS990/SubjToTaxRmnrtnExPrchtPymtInd | 0 | false |
| IRS990/TaxablePartyNotificationInd | 0 | false |
| IRS990/TaxExemptBondsInd | 0 | false |
| IRS990/TerminateOperationsInd | 0 | false |
| IRS990/TotalAssetsBOYAmt | 0 | 3773556 |
| IRS990/TotalAssetsEOYAmt | 0 | 3581583 |
| IRS990/TotalAssetsGrp/BOYAmt | 0 | 3773556 |
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Displayed year
2022 • Form 990Detailed filing. Detailed filing data is available for this year.